Tag Archives: chronic disease
Traveling with Chronic Illness: Q&A with Dr. Bradley Connor
July 28, 2014A consultant to the CDC and a gastroenterologist specializing in gastroenterology and tropical medicine, Dr. Bradley A. Connor has been counseling travelers for more than 30 years. Community asked Dr. Connor for his tips on traveling with chronic illness.
What do you think is important for those with chronic illness to know about travel?
The ability of people with chronic illness to travel has probably never been better than it is now. The ease of travel has developed to the point where people are going to more and more exotic places because there are physicians and health professionals who specialize in health issues related to travel. Those with chronic disease can feel confident at least knowing what the risks are and taking steps to prevent them.
What are some general tips for those traveling with chronic illness?
• Before you embark on travel—it could be domestic travel, travel to Europe, or a more adventurous type of trip, like a safari in Africa, or travel to Asia—check with your doctor who takes care of your chronic disease and make sure it’s his or her opinion that you’re fit to travel and that your condition is in a stable place.
• If you’re traveling to an exotic destination, avail yourself of travel medicine specialists who know the specific health risks. In some cases, either your own physician or a travel medicine physician might find a physician at your destination to refer you to should your illness become active when you travel.
• Preplanning is absolutely necessary. Make sure that your medications are up to date, and that you have more than enough medication for the trip. If your trip is for two weeks, take four weeks’ worth of medication. We’ve had patients who were stuck in Europe in 2010 when the clouds of volcanic ash from Iceland delayed flights. Be a little bit over-prepared.
• Take your medication, in the original, labeled container, in your carry-on luggage, never in your checked bags.
• If you need to, consult with a travel medicine specialist if you’re going to a place with a destination-specific illness.
• Have an emergency plan in place. What happens if your illness becomes active? What are you going to do? That could be something as simple as an email to your doctor; it could be having a doctor then referred to you at the destination.
• Post-travel, is there anything likely that you’ve picked up on the trip that may impact your illness? What are your doctor’s assessments?
What should travelers with chronic illness know about health insurance?
Check whether you do have health coverage overseas. In many cases you don’t. It’s a good idea to investigate what types of policies you can obtain for your travel in case you need to access medical care.
Some might want to consider medical evacuation services. It’s not for every traveler, but sometimes it’s less expensive to contract with a company like Global Rescue or International SOS in the eventuality that you have to be evacuated back home, or somewhere you can get good medical care. The cost of a policy for a short trip is usually fairly reasonable.
Some medications that are legal here are illegal in other countries. Do these issues come up for travelers with chronic illness?
Those issues do come up. There are certain countries, where certain medications (in some instance, even non-prescription medications) are not permitted into the country. Now, having said that, I don’t know of any instance where a traveler with a prescription medication with a physician’s letter has been denied entrance to the country, or has had their medication confiscated.
But, I think it’s something you at least need to consider. Bring a letter from your physician in case you’re questioned about your medication.
In some countries, if you have a physician there who is prepared to give you the medication or prescribe it there, that’s another way around it. But that takes a lot of effort.
The other issue, which is very important, is that the world is plagued with counterfeit medications. Beware of counterfeit medications sold in other countries. If you see a drug that sells for $10,000 here selling somewhere else for $400, be careful. People should take more than enough medication and not plan on buying medication overseas.
What are some of the precautions those who are planning to go on cruises should take?
One thing they can do is to check out the medical backup at the various cruise lines. Everyone is interested in keeping passengers healthy. Some do a better job than others. There are a few cruise lines that have put a lot of effort into having excellent physicians onboard, and having excellent medical directors.
With the norovirus outbreaks that you see on cruise ships, it’s not that there’s a lapse of hygiene with the cruise lines, it’s just that you have a lot of people together, and people are coming onboard with illness. Take the usual, frequent precautions for hand hygiene, like washing with soap and hot water and using hand sanitizers, and make sure the medical back up is there. Do the research.
What are some considerations when traveling with oxygen?
• If you plan on flying, ask your doctor whether you can tolerate the reduced air pressure on a plane and if you’ll need an additional oxygen supply during the flight.
• Check with your airline well in advance of travel about regulations and methods for permitting supplemental oxygen, including the need to carry a prescription for your portable oxygen compressor, whether it’s an approved device, and whether the airline charges for providing supplemental oxygen.
• If you’re on supplemental oxygen, make sure you have an adequate supply and that you have extra batteries for your POC in your carry-on luggage.
• If you’re going to a destination with high altitude, it’s important to let your physician know. Discuss with your doctor what effects altitude might have on your illness and on the delivery of oxygen.
What would you say to those with chronic illness who want to travel, but are afraid?
With proper planning, some of the perceived restrictions of traveling don’t have to be. Use your doctor as a partner. Use specialists in travel medicine if need be. Have an escape plan in place if you get sick. Don’t leave anything to chance.
If you’re new to traveling with chronic illness, take an easy trip first. See that you can do it. Then, maybe for your next trip, you can be a little more adventurous.
Done the right way, with a lot of preplanning, you don’t have to fear travel. If you’re suffering with a chronic illness, travel can be very enlightening and it can be uplifting psychologically.
Posted in Diseases, Featured, Media Center | Tagged bradley connor, cdc, Center for Disease Control, chronic disease, chronic illness, gastroenterology, health insurance, Healthcare, Travel, traveling, tropical medicine, weill medical college of cornell university | Leave a commentAccessible Travel: Travel Therapy
June 30, 2014Those with chronic conditions and limited mobility have more options than ever before for accessible travel. Eva Leonard talks to travelers with special needs and accessible travel experts about important considerations when planning a trip.
“Part of my job is to make vacation travel possible,” says Royal Caribbean International Manager, Access Compliance, Ron Pettit. “Many people with disabilities don’t think about traveling or taking a vacation as an option.
“They have challenges in everyday life; getting out of bed, getting out of the house, going to school, to work, going shopping, and going to the doctor. So sometimes, when they think of all their daily challenges, they think, ‘Oh my goodness—I don’t think I could go on a cruise.’
“Some folks are born with a disability, so they’ve learned how to adapt all along. But a lot of people have acquired a disability with age, or a medical issue, so they have to rethink and learn things all over again.”
Fear of the unknown can be a factor in deterring those with chronic illness from traveling, says Pettit, who has worked for the past 25 years to improve travel for the disabled, first for 17 years at Northwest Airlines, where he served as program manager for customers with disabilities, then joining Royal Caribbean in 2006.
“It’s those personal issues. ‘How do I go to the bathroom? How do I know about oxygen? How do I do these things?’ Because, while they have learned to adapt at home, or maybe when going out a little bit, the thought of going onto an airplane, or going onto a ship seems a little daunting. They ask, ‘How would I ever do this with my new limitations?’”
But many with disabilities are traveling. The U.S. Census reports that more than 38 million Americans live with disabilities, and, according to a 2005 study by the Open Doors Organization and the Travel Industry Association of America, U.S. adults with disabilities or reduced mobility spend around $13.6 billion on travel every year.
With the world’s population now at 7 billion, about ten percent require barrier-free and easily accessible facilities. “Global estimates [of people with disabilities] range from 600 million to 900 million,” says Lilian Muller, President of the European Network for Accessible Tourism.
To meet rising demand, accessible and barrier-free travel options have grown dramatically over the last two decades. Whether you opt for a leisurely Caribbean cruise, a scenic train ride through the Canadian Rockies, or something more distant and action-packed, careful research, planning and preparation can help you decide which getaway is best for you and allow you to fully enjoy the mood-boosting, stress-reducing rewards of travel.
BEFORE YOU GO
Before you start planning your trip, check with your doctor to assess what you can do, and, depending on the type of trip you plan to take, consider working with a travel agent who understands your needs. Says Pettit, “The more information you can share about your ability and needs, the better.”
Make arrangements well in advance for wheelchair, scooter, and medical device and supply accessibility and rental. Says traveler Tracy Schutt, “Since being on oxygen 24/7, traveling has become challenging, but not impossible. Making trips to Jacksonville, Florida, to visit family requires preplanning with my home care company to have oxygen supplies waiting when I get there.”
Another traveler with pulmonary hypertension suggests sending IV medication and supplies ahead by overnight service and arranging for an oxygen concentrator, so that all are in place on arrival.
Traveler Milli Washock advises, “Have a sheet handy with all pertinent medical information, medication, supplies and emergency contacts. Being on [intravenous infusion] therapy and oxygen, I have written on top [in big, bold letters], ‘Do Not Stop Pump.’ And, she adds, for devices that must be charged or plugged in, “When traveling to a foreign country, be sure to have the proper electrical adapters.”
It’s also important to get as much information as possible in advance about the availability of services you might need en route and at your destination. For example, find out what airline, hotel, rail, or cruise staff can assist you with when traveling, and if there is a medical facility specializing in your condition at your destination. If you’re planning a cruise, ask what types of onboard medical services are available, and if there is a fee.
HOTELS, RESORTS, AND THEME PARKS
Travel writer Candy Harrington has been covering accessible travel for the past 16 years and has authored books on the topic, including, Barrier-Free Travel; A Nuts and Bolts Guide for Wheelers and Slow Walkers. She also writes the barrier-free travel blog www.BarrierFreeTravels.com.
Harrington advises travelers with special needs to be very specific about their needs and ask detailed questions when booking a hotel room.
“First and foremost,” she emphasizes, “you have to understand that there are many types of accessible rooms, so you have to ask for an accessible room with the features you need. Don’t just ask for an accessible or an ‘ADA-compliant’ room.
“If you need a roll-in shower, specify that, because all accessible rooms do not have roll-in showers—some have tub/shower combinations. If you need the toilet grab bars on a specific side, you need to specify that too.
“And if bed height is an issue for you, inquire about that also. Bed height is not covered under the Americans with Disabilities Act (ADA), and you could very well end up with a 32-inch-high bed, which would make transfers very challenging.
“Don’t assume that the accessible hotel room is going to have the exact same features that your own home has, because in most cases, it won’t. Ask a lot of questions to make sure you get the access features you need.”
Some hotels are more accessible than others, and good indicators of their commitment can often be found online. Benchmark Resorts & Hotels comprises 13 properties across the United States, and the company’s website promotes Benchmark’s commitment to ADA compliance, with detailed accessibility information for each property.
Benchmark’s Turtle Bay resort on Oahu’s North Shore features 15 ADA-compliant guest rooms and one ADA-compliant cottage. Other accessible features include the resort’s swimming pools, hot tubs, fitness center, spa, restaurants, lounges, and a wide-open door-less gateway entrance.
Stockholm-based Scandic Hotels, with nearly 230 properties throughout Northern Europe, has won awards for its hotels’ accessible features, such as a minimum of two cane holders attached to the front desk, carpet-free meeting rooms and height-adjustable beds. In consultation with disability organizations, hotel guests, and team members, Scandic Hotels drew up an accessibility standard in 2003 that works as a checklist and template for the hotels. The standard has grown over the years, and today it contains 110 checkpoints to follow. Eighty-one of these points are mandatory for all hotels, and for new hotels, all points must be considered.
Community spoke with Magnus Berglund, Scandic’s accessibility director, about his work with Scandic and how his service dog, Dixi, helps him throughout the day.
How did you first become involved with Scandic Hotels?
It started about ten years ago, when I was a cook at Scandic Hotels. Due to a muscle disease, I was on sick leave for five years. When I was able to start work again, I contacted my former employer, with my ideas on how the hotel chain could increase accessibility and use accessibility to gain competitive advantage. In 2003, I was appointed disability ambassador for Scandic Hotels.
What is a typical day like for you as Scandic’s director of accessibility?
I work with all departments at head office, on everything from new hotels to renovations. I consult with Scandic’s hotel designers on accessibility, and I’m also involved with employee education within Scandic. I travel a lot, often several times a week, when I visit any of our hotels or when I’m invited as a speaker around the world.
Dixi is a service dog that helps me with everything from getting my clothes to the bed in the morning to picking up things that I drop. She also carries my computer bag when I’m flying, and she follows me on all my trips. Basically, she follows me everywhere I go in my daily work, at the office, at conferences, when I’m invited as a speaker, and so on.
What are some of Scandic Hotels’ smart design features?
A really smart design feature is our cane holder at the reception desk. We also have our vibrating alarm clock that the guest puts under the pillow, so if you’re hearing-impaired, the clock will wake you up so you “hear” the fire alarm. We also have special bread for breakfast for guests who have gluten or lactose intolerance.
What are some of the barriers that travelers with disabilities encounter most often when they travel?
I think it’s extremely different [depending on] what kinds of special needs people have. The big challenge is to get the right information.
For more information on Scandic Hotels, go to www.scandichotels.com/Always-at-Scandic/Special-needs
A video on Turtle Bay’s website features paraplegic surfer Jess Billauer, founder of the Life Rolls on Foundation, dedicated to improving the quality of life for young people affected by spinal cord injury, as he easily wheels through the resort, surfs with an adaptive electric surfboard and describes the independence that accessibility brings.
“We do everything possible to make sure everything is accessible,” says Gary Harnist, vice president of construction and design for Benchmark. “ADA guest rooms at Turtle Bay have automatic doors. The peepholes are lower. Bathrooms have roll-in showers, and shower, temperature and lighting controls are at a reachable height. We want to make sure the balconies are accessible, so we have sliding glass doors and ramps.”
Harnist advises, “Ask questions before you arrive. Let us know what your needs are. Many times we’ve sent staff members to the store to buy a lower shower seat, or called a rental company to get the kind of wheelchair a guest needs to insure that their stay is perfect.” For more information about Benchmark Resorts & Hotels, go to www.benchmarkresortsandhotels.com/about/social_responsibility/ada_accessibility_compliance
As with hotels and resorts, when planning a trip to a theme park, checking in advance for clarity on accessibility and disability policies can be a good idea. Walt Disney World and Disneyland Resorts made headlines in October when it replaced its Guest Assistance Card (GAS) program with a Disability Access Service Card (DAS).
A Disney Parks blog post by Thomas Smith, social media director, Disney Parks, explains that guests with disabilities can now “request a DAS at Guest Relations and receive a return time for attractions based on the current wait time.” Prior to the change, which Smith said was prompted by abuse of the program, guests with disabilities had been able to go directly to the front of the lines for Disney attractions.
For more information on Walt Disney World and Disneyland Resorts, go to http://disneyparks.disney.go.com
CRUISES
A recent study by the Open Doors Organization and the U.S. Travel Association found that 12 percent of Americans with disabilities have taken a cruise in the last five years.
“Cruises are great for people who need to move slowly and take their time. You can be as active as you want and do everything, or you can do as little as you want, have a nice spot in the lounge and watch the sea,” says Royal Caribbean’s Pettit. “We’ve designed our cruise ships to be very accessible, so there are elevators, ramps, and platform lifts. We have options all over the ship for guests with limited mobility.”
Travel agents can be helpful in sorting out accessible cruise options. Says Pettit, “If you’ve never cruised before, you don’t know the questions to ask, and that’s why we recommend using a travel agent.
“There are travel agents who specialize in accessible cruises and in specific conditions. Some specialize in dialysis cruises, autism cruises, deaf cruises, blind cruises, and disability in general, and not just group cruises. They deal with individuals or families. They specialize, may have the disability themselves, and know the questions to ask. They can help walk you through making an informed decision about the right cruise line and cruise for you.”
Says traveler Milli Washock, “A few years ago, I went on a weekend cruise, with a wheelchair, room air concentrator, oxygen tanks, a portable concentrator and a BIPAP, and did quite well. The cruise line, Carnival, went out of their way to bring me [my oxygen] tanks wherever I was and made sure everything was taken care of in the cabin and with shows and dining. They even had distilled bottled water. We had a great time.”
For those cruising for the first time, Washock suggests, “Book a room with open air, a window and/or a balcony, and liberally use hand sanitizer everywhere.”
Says Pettit, “Oxygen has changed over the years. What works well for a lot of people now is the new portable oxygen concentrator, what I call’ the magic box.’ It takes ambient air and turns it into breathable oxygen on demand.
“This works well for many people who require oxygen therapy. It may not work for everyone. Some people need continuous air flow. They may need a flow rate that’s higher than what the portable concentrators can give. But for many, many people, portable oxygen concentrators have been revolutionary.
“Portable oxygen concentrators allow passengers to use the same equipment in the plane, on the ground, and on the cruise ships. We have power outlets in our staterooms, so passengers can charge overnight, and they can bring extra batteries as well.
“Technology and the ability of our staff to assist our guests go a long way to help [those with special needs] think about cruising as a possibility. We provide our staff with sensitivity training and technical training, primarily for wheelchair assistance and assisting guests on and off the ship. That’s the number one request that we get.
“We provide training about different types of disabilities and how to communicate with different types of guests. We focus primarily on people with mobility, hearing, and visual disabilities, but we do talk about guests with cognitive or developmental disabilities.
“From an identification perspective, there’s always the question of dignity in providing too much information. The more information we have, the more we can assist you. If we don’t understand your condition, we may provide inappropriate support. If we know ahead of time, it makes things easier.”
In February, Royal Caribbean was the first cruise line to be named as autism-friendly by Autism on the Seas, a agency that develops cruise vacation services for those with children with special needs.
Says Pettit, “Our products and services are accessible for guests with autism and other developmental disabilities. We have priority check in, boarding, departure, and special dietary offerings like gluten-free items. We offer modifications to our youth program onboard, like dropping down an age group if the child would be more comfortable, based on ability.
“We offer autism-friendly movies: The sound is not so loud, the lighting is a little bit lighter, and the kids are encouraged to get up and walk around during the movies. We added a social story to help families dealing with autism prepare for their cruise. Often children with autism need a little structure and preparation, [so we let them know that] when you get to the ship, this is what you’re going to see and this is what you’re going to do, so they can prepare. And really, it’s about the entire family and not just children. Many of our features are used by teens and adults with autism.
“Everybody is different. Their needs are going to be different. We can work with our guests and our travel agents to see if we can help accommodate that need. A lot of our business continues to be booked through travel agents. For many people, it’s their first time, or they may have special needs. You may need a little additional help from an expert. It makes for a much better cruise experience.”
Royal Caribbean’s Access Department is a resource center for guests and travel agents. Staff can answer questions about accommodations for guests with disabilities and can be reached at 866-592-7225 (phone); 954-628-9708 (local); 954-628-9622 (fax) or email [email protected]. Or for more information, go to www.RoyalCaribbean.com/AccessibleSeas
WHERE TO CRUISE
Pettit says that cruises that involve the United States are often preferable for those in wheelchairs or those who need to move slowly. “Alaska, Hawaii, New England, and Western Pacific coastal cruises are all great options, simply because they involve U.S. ports of call, and, generally, when you’re within the U.S., you have a much better sense of accessibility.
“There are curb cuts. There are accessible restrooms and facilities. Whenever you get outside of the U.S., while there are accessibility regulations in place, they may not always meet the same level as in the U.S.”
“The Caribbean has mixed levels of accessibility. We’ve seen progress over the years in many of our ports of call. People tend to gravitate to the Eastern Caribbean itineraries more because more of the ports of call are docked—that means you can roll on and roll off the ship with ease. When you get to the Western Caribbean, you have more ports that are tender,” says Pettit.
“We sail to more than 300 ports of call around the world, and about one third of those ports are tender. What that means is that our ships cannot dock at a pier. They have to anchor in the harbor, and so we transfer guests onto a smaller vessel, usually called a tender. They take that tender to the port and get off there. That process may pose some challenges for guests in wheelchairs and those who have difficulty walking.
“Our larger ships, like Oasis of the Seas and Allure of the Seas, are great ships for guests in wheelchairs and those with difficulty walking, because they never have to tender. They always dock.”
Bob Curley, Caribbean travel expert for About.com, notes that the U.S. Virgin Islands must comply with the ADA and that “Barbados has also made a pretty concerted effort to be compliant, as have Aruba and St. Maarten. Every cruise port in Jamaica is a non-tender port, and St. Thomas also has a dock.”
Says Pettit, “Europe is becoming increasingly accessible, although it’s mixed. A lot of our ships sail there in the summer. There are cobblestone streets, and there may not always be curb cuts. The buildings are older, so they might not always have the wider doors and accessible restrooms. It does require that our guests and our travel agents research the different ports of call to see which ones are more suited than others.
“The Mediterranean is increasingly becoming more accessible, and the more northern and the western you go, it gets more accessible. When you look at bigger ports, especially those that have hosted the Olympics, because they hold the Paralympics, they have increased accessibility over the years.
“Athens and Barcelona are recent examples, so they may have more accessible taxis and motor coaches and overall facilities for people in wheelchairs. You go to some of the smaller ports, like Santorini, and the island ports, and there are mixed levels of accessibility.
“The challenge we get with different ports of call is usually with accessible vehicles; if a guest has some ability, or a caregiver who can assist them into a regular taxi, or they can go up a few steps into the motor coach, more options become available.”
To improve accessibility for guests with more limited mobility, Pettit says that, in Europe, Royal Caribbean has created Easy Tours—a modified version of the cruise line’s panoramic city tours.
“It’s a narrated ride throughout the city on a bus, with a couple of opportunities to get off to look around. These have a motor coach with a lift, or, more often in Europe, a van with a ramp in the back. These are in about 80 ports and are a great option for guests in wheelchairs or scooters, who have limited capability.”
RAIL TRAVEL
Rail travel has its advantages for those with chronic conditions and medical devices, and train trips throughout the U.S. and Canada can be a good place to start.
Says traveler Milli Washock, “I always used to find a plug at the gate [at the airport] for last-minute charging, but I don’t fly anymore. Traveling [domestically] by train is easier in that there is a plug by every seat. It takes longer, but you have a bigger selection on dining and with movies if you plug in your laptop or device.”
With input from disability advocacy organizations, over the past five years, Amtrak has made accessibility improvements at more than 200 stations. All Amtrak trains have accessible seating and restrooms, and all long-distance trains have accessible bedrooms. Amtrak also offers a discount to passengers with disabilities and their companions.
For more information, go to www.amtrak.com/accessible-travel-services.
Other countries have also made recent improvements in rail travel accessibility. Australia, for example, offers a host of services and special deals to meet the needs of travelers with disabilities, including accessible services in most of its trains. For more information, go to www.australiaforall.com
But accessible international rail travel might be even closer than you think. “We are more accessible than flying or taking the bus,” says Jacques Gagnon, senior manager, media and community relations for Via Rail Canada, Canada’s national passenger rail service.
“When you take Via Rail, you can enjoy traveling while looking out the window and seeing scenic portraits of cities, prairies, and the Rockies, while being comforted by having a quiet time.
“It’s spacious. We have invested in making cars accessible, roomy, and user-friendly for people with limited mobility and special conditions. We also cater to gluten-free and other special dietary needs, with advance notice.
“Canadian laws and regulations provide ample services for people with limited mobility. It’s part of the fabric of Canada to provide accessibility to its citizens and to travelers.
“At various stations we have lifts to allow people with wheelchairs to board the train. We have a dedicated area where the person will anchor his or her wheelchair safely.
“We also allow someone, or a service animal, to accompany that person and ride at no additional cost. We ask to receive 24-hour, or ideally, 48-hour advance notice that someone with a specific condition will be boarding the train so the attendants can recognize and attend to their needs.”
For those interested in viewing gorgeous vistas while riding the rails, Gagnon says, “There are two long-haul routes—one is The Ocean—a 22-hour journey from Montreal to Halifax. The train travels along shorelines of the Atlantic Ocean and has a panoramic car.
“The other one is The Canadian, between Toronto and Vancouver, through the Canadian Rockies and the prairies. It‘s a very scenic three-and-a-half-day journey. The track goes across terrain where there are no highways and roads. It’s very unique—even in the summer time, the Rockies are covered with snow. It’s a very elevated, beautiful terrain, with views of the Pacific Ocean.” For more information on Via Rail, go to https://www.viarail.ca/en/travel-info/special-needs/accessibility
AIR TRAVEL
Getting as much information as possible and alerting the airline to your needs in advance, as well as allowing time for delays, are critical when traveling by air. Be sure to factor in potential traffic issues, lengthy distances between gates, crowds, long lines and flight delays when connecting. And don’t be hesitant to ask for assistance, such as wheelchairs or electric carts, experienced travelers advise.
One flyer says, “My husband has Huntington’s disease, and for him, we found going on the plane with assistance has given him more time to get to his seat without people pushing and being impatient. Also, we request wheelchair assistance at all airports.
“If you’ve ever been to Jamaica, Miami, or Atlanta airports, then you know it’s like walking a mile from one point to another. Imagine if you only have half an hour to get from one gate to the other. Always ask for assistance when needed. Most of the people who work at airports are only to happy to help.”
Traveler Keti Galanos says, “Panic attacks are commonplace for those of us afflicted. I am at the near norm readings for PAH, yet will take medication for the next year. I request a wheelchair, as I cannot run between gates in the airport, and I always panic and am out of breath.”
Traveler Cheryl Kneal recalls, “I traveled to Chicago from Orlando over Christmas. I had my portable oxygen concentrator and had the airline take me to the gate for departure, and then, when we arrived, to where I was picked up, to conserve energy.”
Kneal adds that, to deal with stress and panic attacks about running out of oxygen, she meditated frequently during the two-hour flight.
For those with limited mobility, addressing needs step-by-step ahead of time is key to alleviating stress and making travel as hassle-free as possible. When making your airline reservation, let the agent know if you’ll be traveling with a wheelchair or scooter, if you’ll need one at the airport, and if you’ll need to transfer to one of the airline’s aisle wheelchairs (a narrow wheelchair designed to fit aircraft aisles) to help you board or deplane. Also ask if you can use the aisle wheelchair during the flight to get to the bathroom.
Ask to keep your wheelchair until you get to the gate, check it there, and have it returned to you at the gate on arrival. (Depending on the type of wheelchair you have and space available, it will either be stored in the cabin or in the baggage hold during the flight.)
Flight attendants can help passengers use the aisle wheelchair to get to the restroom, but not in the restroom, and many onboard restrooms are not wheelchair accessible. Flight attendants are also not required to lift or carry passengers. Some fliers with limited mobility limit fluid intake before and during a flight to prevent the need to use the restroom, however doing so can present the risk of dehydration and other medical problems.
Flying can also be unpredictable. Air traffic and weather delays can mean the plane is stuck on the runway before takeoff or circling for an extra hour before landing. If you have limited mobility, it might be advisable to consider flying with someone who can help you in the restroom, or catheterization, rather than limiting fluids.
AIRPORT SECURITY
Candy Harrington advises those who have concerns about navigating airport security in wheelchairs and with medication and medical devices to check the TSA guidelines beforehand.
“Although the TSA is exempt from the ADA and the ACAA, they have developed specific guidelines for dealing with disabled passengers. They list these guidelines on their website, so it’s a good idea to familiarize yourself with them, so you will know what to expect.”
Traveler Ruth Cozad says that she was pleasantly surprised with her TSA experience. “We went to Hawaii with both oxygen and CPAP machines and had an amazing trip. Going through security was my big worry, and it went so smoothly.” For more information on TSA guidelines, go to www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions or call the TSA Cares hotline at 855-787-2227 with any access-related questions prior to travel.
DRIVING
For some travelers with chronic conditions, especially those traveling with oxygen, driving can provide the most stress-free journey, and help them slowly ease into travel. Taking short trips from one central location can also help to conserve energy and get the most out of a trip.
Cozad suggests, “My advice would be to stay in one location and take day trips, instead of moving each day. We often take driving trips that last several weeks, and those are easy enough, with my husband unloading and reloading oxygen and CPAP equipment, plus our luggage.”
Milli Washock says, “A lot of people are using the Inogen One portable oxygen device, and it’s nice to go on a plane or a ship. I find it great for long-distance auto travel.”
A potential problem, though, says Washock, is that the device does not have a HEPA filter. She recalls that once, while she was dining out, “a man was smoking a cigar in the nearby bar, and suddenly I was ‘smoking a cigar’ and could not breathe.”
In this case, Washock found that traveling by car had benefits. “Thankfully, I had an oxygen E tank in the car and did not have to permanently abandon my dinner, but it gave me something to think about.”
Despite such challenges, Washock says, “It is good to travel if you can. Just because our bodies do not cooperate the way we want does not mean our brains and lives have to shut down. And, she notes, travel, no matter the distance, can be enhanced by state of mind. “Take it slowly, and enjoy the world around you, whether traveling to your porch or across the world. Each day is a new day.”
Posted in About Us, Diseases, Featured | Tagged accessibility, accessible travel, ada compliant, allure of the seas, americans with disabilities act, americans with disability act, autism, autism on the seas, barrier-free travel, Benchmark turtle bay resort, bob curley, candy harrington, cheryl kneal, chronic condition, chronic disease, chronic illness, disabilities, disney parks, disneyparks, European Network for Accessible Tourism, jess billauer, keti galanos, life rolls on foundation, lilian muller, limited mobility, magnus berglund, milli washock, mobility, oasis of the seas, open doors organization, Pulmonary Hypertension, ron pettit, royal caribbean, ruth cozad, scandic hotels, service dog, spinal cord injury, thomas smith, Travel, traveling with disability, trip, u.s. travel association, vacation, via rail | Leave a comment
We Can Be Heroes: Patricia George, M.D.
May 18, 2014
Patricia George, M.D., spoke with Community about her work in pulmonary transplant medicine, her HIV-PAH research, and her motivation as a member of PHA’s four-woman Team PHenomenal Hope in the nine-day 2014 Race Across America.
Going into medical school, I had passion for and experience in immunology research, so transplantation was something in which I was always interested. And like many who go into pulmonary medicine, I was initially drawn to it through my medical school and residency rotations in the medical intensive care unit. I enjoyed pulmonary physiology, and the work and pace of critical care medicine.
In addition, as a medical student, I met a patient with cystic fibrosis awaiting a lung transplant in the medical intensive care unit. I got to know her and her mom, and some of her life story, and wanted to be able to help people like her with lung disease. So that led me to pulmonary medicine and pulmonary transplant medicine.
My research involves looking at the mechanisms of HIV-associated pulmonary arterial hypertension (HIV-PAH). Pulmonary arterial hypertension is quite rare, however in patients with HIV, it affects at least 0.5 percent, and perhaps more, according to recent studies. That’s at least one in [every] 200 patients!
Advances in HIV care have changed the landscape for people with HIV, and many now label HIV a chronic disease. So medical complications, like HIV-PAH, become extremely important to study and hopefully help people live longer and live better.
Team PHenomenal Hope came together with people passionate about cycling and raising awareness. As an avid cyclist, it had long been a dream to someday race in the Race Across America (RAAM).
Stacie Truszkowski, one of my close friends in the cycling community, also shared this dream. So, in 2011 and 2012, Stacie and I reached out to our endurance cycling friends whom we thought might be crazy—er—passionate—enough to do this as well, and in 2012, with the addition of Anne-Marie Alderson, Ryanne Palermo, and Kate Bennett as our crew chief, our four-woman cycling team was born.
We organized this Pittsburgh-based team, met with our friends at PHA, as well as our earliest sponsors, and formed Team PHenomenal Hope. Later that summer, we added to this group Greta Daniels, assistant crew chief and alternate racer, and Sara Harper, alternate racer and crew.
Our mission is to dedicate our training and racing to those who live with pulmonary hypertension, to raise public awareness about the disease, and to raise funds to find a cure.
I started biking during pulmonary fellowship. I wanted to get back in shape, and a new women’s cycling team called Steel City Endurance was forming. I joined them in the inaugural year, and became totally enamored with biking and bike racing and met a lot of really neat people.
I enjoy being outside, escaping the stresses of my sometimes hectic lifestyle. As for endurance cycling, I enjoy pushing my body and mind to some sort of limit. It allows you to lose yourself in the present—how you’re feeling at that time.
We’re working with our team coach, who’s helping coordinate our training schedules so that they build and peak at the right time. Training is about consistency—getting the workouts in, getting stronger every day (except rest days). Eating healthy and getting enough sleep are crucial too.
As a team, we’re racing the whole race as a relay. To make the time cut-off and make it to the finish line as fast as we can, we divide up the ride into 20-to-30-minute segments.
On a four-person team, typically two riders will be out on the road, trading places in 20-to-30-minute pulls (one riding, the other in a support vehicle leapfrogging ahead for the exchange to happen). This pair of the four-woman team will ride for four to six hours, while the other pair rests, eats, sleeps, and recovers. It goes 24/7, from the time the gun goes off until we cross the finish line.
From what I hear, mental toughness will be one of the biggest challenges during RAAM. Those who have done it say that, at about day four or five, the sleep deprivation kicks in, and the reality of the Midwest flatlands also hits you. I know there is beauty in rolling plains, but at that point in the race, it may be tough to see it.
During RAAM, the crew is the essential group of people that will get us from Oceanside, California, to Annapolis, Maryland. The crew chief, Kate Bennett, is in charge of coordinating the drivers, navigators, medics, mechanics, nutrition, making sure we’re on course, and that people— including crew—are getting enough sleep, food, etc. A race with this relay between four racers, moving across the country with an RV, two support vehicles, and 13 crewmembers is quite an undertaking.
The greatest source of inspiration is the PH community. When I think about how hard it may be to be on the bike, mentally or physically, I think about what my patients go through on a daily basis.
I get to choose to ride my bike, to push myself through discomfort. My patients don’t have such a choice. They wake up and live with pulmonary hypertension every day, and face whatever that day may bring, and many do so with such grace. So when I’m feeling less than motivated, I often think of people I know living with PH, and it motivates me to get this job done.
Likewise, in my practice, I am regularly reminded of the need for a cure. I often evaluate patients with pulmonary hypertension in need of a lung transplant. For this group of patients, they often no longer are responding to medications. It is a reminder that, while we have come so far, and many patients do respond to medical therapies, we still need a cure.
In my job, I also conduct PH research, and know firsthand how important funding is to exploring the frontiers in science. It makes it all the more important to me that Team PHenomenal Hope is raising money for PHA to fund grants and help other scientists have funds needed to find a cure.
We have something truly special with our partnership with the Pulmonary Hypertension Association. PHA launched a Race of Our Lives campaign, and we have been amazed how people in the community have organized their own Unity events, walking, riding their bikes, doing whatever they can to raise awareness about PH and join us in raising funds to find a cure.
Team PHenomenal Hope is bigger than four of us on bikes, or the 17 of us crossing the country. This is actually a huge team that spans coast-to-coast.
Pulmonary hypertension is a rare disease that can affect anyone, from children to adults, men and women, and people of all races and ethnic backgrounds. Initially, it is often misdiagnosed as another pulmonary condition, taking on average over a year to make the correct diagnosis and get the proper treatment.
Although it is a rare disease, it is important for doctors to at least think about pulmonary hypertension in their differential diagnosis when faced with a patient with shortness of breath, because without considering it, the diagnosis won’t be made.
Fortunately there are many medical treatments on the market, changing the prognosis for many who have this disease; however there still are people who do not respond to therapy, and to date there is no cure. Team PHenomenal Hope is working with PHA to do something to try to change that.
Posted in About Us, Diseases, Featured | Tagged anne marie alderson, bicycle, bicycling, bike, biking, chronic disease, cycling, cystic fibrosis, greta daniels, hiv-pah, hivpah, kate bennett, lung disease, pah, patricia george, patty george, PH, PHA, phenomenal hope, Pulmonary, pulmonary arterial hypertension, Pulmonary Hypertension, Pulmonary Hypertension Association, pulmonary medicine, pulmonary physiology, raam race, race across america, race of our lives, ryanne palermo, sara harper, stacie truszkowski, steel city endurance, team phenomenal hope, transplant, transplantation | Leave a comment
Family Medicine
December 18, 2013The role of genetics—in researching, predicting, diagnosing, preventing, and treating rare and chronic illness—is dramatically expanding. Community asked leaders in genetic medicine what that means for you and your loved ones. Eva Leonard reports.
Since the 1990 initiation of the Human Genome Project to map the human genome, and its completion in 2003, the pace of genetic research has steadily accelerated. Most diseases have a genetic component, but, according to the CDC, “researchers have identified only a small fraction of the genetic component of most diseases.”
Perhaps nothing better illustrates the surge in public interest in genetics than the best-selling status of 2010’s “The Immortal Life of Henrietta Lacks,” in which author Rebecca Skloots compellingly chronicles the true story of Lacks, a young woman with cervical cancer, whose tumor cells were taken and cultured by a researcher, without her knowledge or permission.
Lacks died in 1951 at the age of 31, and in the six decades since, her tumor cells—which are “immortal,” and unusual in that, unlike most cells, they keep growing and multiplying in lab culture—have been used to establish the HeLa (for Henrietta Lacks) cell line. The HeLa cell line has helped researchers study and develop treatments for diseases including polio, cancer, hemophilia, AIDS, Parkinson’s disease, and leukemia, It’s estimated that more than 50 million metric tons of HeLa cells have been grown for use in invaluable lifesaving medical research worldwide since Lacks’ death.
(Top, left) Cover of “The Immortal Life of Henrietta Lacks.” (Above) HeLa cells. Photos: NIH (Below) Dr. Kevin Strauss (right) and Dr. Holmes Morton (center) of the Clinic for Special Children, and a young Menonnite patient (left) at a Shippensburg, Pennsylvania benefit auction for the clinic. Photo: Matthew Sware
Lacks’ family was unaware that the HeLa cells were being used for research until the 1970s. In August 2013, NIH and the Lacks family announced an agreement allowing biomedical researchers controlled access to the data gathered from study of the HeLa genome, and the Lacks family a role in the work being done. Researchers who use or generate data from HeLa cells will now be asked to include in their publications an acknowledgement and expression of gratitude to the Lacks family for their contributions.
Lacks’ story has generated so much interest that Oprah Winfrey plans to produce an HBO screenplay adaptation of the book. Beyond Hollywood, this prompts the question: How do genetics affect patients and families living with chronic and rare diseases?
Personal Power
Sharon Terry, President and CEO of the nonprofit health advocacy organization, Genetic Alliance, found herself drawn into genetic research advocacy when her own children were diagnosed with the rare genetic condition pseudoxanthoma elasticum (PXE) in 1994.
Their children’s diagnosis led Terry and her husband Patrick to found the research advocacy organization, PXE International, eventually resulting in the discovery of the gene associated with PXE. Terry recalled, “My husband and I felt that if we didn’t do something, nothing would be done.”
Terry believes that genetic research will have a profound impact on health care over the next decades. “We will have a much better understanding of disease,” she said. “We’re also going to be able to understand what role environment plays.”
“We all have some things in our genome that are not perfect. We believe that the individual needs to be empowered. We offer tools to help them deal with it,” Terry said, and tools to answer the question, “‘How do I get involved in research?’”
Genetic Alliance’s goal, Terry said, is “that we get better at finding ways of empowering people. We want treatments for all of these diseases. We want to accelerate people getting the services they need.”
Family History
When Venezuelan physician Americo Negrette arrived in San Luis, Venezuela in 1952 to begin his rural internship, he observed the uncontrolled movements and unsteady gait of many of the residents of several insolated, impoverished villages along the shores of Venezuela’s Lake Maracaibo. Negrette initially thought they were intoxicated. Locals called the condition “el mal de San Vito” (the sickness of St. Vitus).
Negrette was intrigued and began researching the illness among the local population. Through his studies, Negrette determined that “el mal” was in fact Huntington’s disease.
In 1968, psychoanalyst Milton Wexler founded the Hereditary Disease Foundation when his wife, Leonore, was diagnosed with Huntington’s disease. Four years later, Negrette’s colleague, Ramon Avila-Giron, presented a film about one of the Venezuelan HD villages to attendees of a Huntington’s disease symposium. The audience was astounded, having never before seen such a large concentration of Huntington’s patients. Leonore and Milton Wexler’s daughter, Nancy, was in the audience.
Leonore Wexler succumbed to Huntington’s disease in 1978. The next year, Nancy Wexler began a 20-year study of the families living around Lake Maracaibo. They would later become known as the world’s largest Huntington’s disease family.
Over the course of the next decades, Wexler and her team studied more than 18,000 residents of the area, mapping their vast family tree, and collecting more than 4,000 blood samples. They ultimately traced the gene’s origins in the region to one common ancestor, Maria Concepción Soto, who died from Huntington’s disease in 1880, and who might have inherited the HD gene from a European sailor who was her father.
(Above) The Clinic for Special Children, Strasburg, Pennsylvania. (Below) Dr. Holmes Morton speaking at a Mifflinburg, Pennsylvania benefit auction for the Clinic for Special Children. Photos by Matthew Sware
In 1983, as a result of their research on the Venezuelan families, Wexler and her team discovered the location of the gene that causes Huntington’s disease, and in 1993 they isolated the Huntington’s gene.
The discovery of the HD gene led to the development of the HD test, which can determine whether pre-symptomatic individuals will develop the disease. The blood samples collected by Wexler have also helped map genes for diseases including familial Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), and kidney cancer.
Today, modern genetic technology is helping treat communities whose ways of life are deeply rooted in tradition. Built and supported by Amish and Mennonite families, the Clinic for Special Children was founded in 1989 in Strasburg, Pennsylvania by D. Holmes Morton, M.D., and his wife, Caroline.
During Dr. Morton’s research fellowship at Children’s Hospital of Philadelphia, his diagnosis of an Amish boy’s illness led to the discovery of 16 other Amish children in the same community with the same rare disorder, known as “Amish cerebral palsy,” which was actually glutaric aciduria type 1 (GA1).
Learning that Amish and Menonnite children can be particularly vulnerable to certain genetic disorders, including alpha-1 antitrypsin deficiency and complex partial epilepsy, the Mortons decided to establish the Clinic for Special Children. The clinic is dedicated to researching and treating the rare diseases found in these communities, aiming to prevent disability and early death, and to do so locally and inexpensively, with state-of-the-art technology.
Community spoke with Kevin A. Strauss, M.D., Medical Director of the Clinic for Special Children about the clinic’s genesis and mission.
(Above) Kevin A. Strauss, M.D., Medical Director, the Clinic for Special Children
After the clinic set up local pediatric services, it very quickly became clear that a number of other diseases in this population would be amenable to this kind of approach. We deal with more than 140 rare genetic diseases, and we discover on average four genetic diseases every year.
We’re supported by, and here to serve, uninsured Amish and Mennonite patients. We’re trying to find the most robust, affordable and rapid technologies for our populations.
One of our guiding principles is that we’re continually trying to utilize biomedical diagnostics to deliver better services to patients. We have a Ph.D. molecular geneticist on staff and can do very affordable molecular testing.
For our alpha-1 patients, we do a 45-minute test for $50, using light scanner technology and thermocycling for high-res genotyping analysis. It’s a very simple DNA-based test, and it’s cheaper than doing serum enzyme testing. I don’t think a lot of people are using this technology.
Alpha-1 is more common in the Amish and Mennonite communities than what you would find in the general population. The Amish and Mennonites are what you call ‘founder populations.’ In the late 1600s, they began migrating from Switzerland to the U.S., but very few of them survived the voyage.
(Left) Father and child, Shippensburg, Pennsylvania benefit auction for the Clinic for Special Children. Photo: Matthew Sware, the Clinic for Special Children
Approximately 100 couples are the sole genetic stock for the approximately 30,000 Amish in Lancaster County, Pennsylvania. They’re small gene pools for large populations. There is a higher incidence of some diseases within these populations, because carrier status gets carried on.
Complex partial epilepsy is not a single entity, but multiple different genes and it’s probably the fourth or fifth most common diagnosis in our patients.
There are different genetic risks based on ethnicity. There are also certain genetic diseases they don’t get. Cystic fibrosis, for example, is unheard of in Amish and Mennonite patients.
Although the Amish and Mennonite are averse to technologies that are divisive, like iPods, they are accepting of technologies that are life-affirming and beneficial to the children and the community. They are very willing to participate in clinical research. More than 70 published papers have come out of research that we have done here.
What I find most striking about the clinic is that it’s a model for traditional old-fashioned medicine, caring for the individual on a local, low-cost basis, during the most astonishing revolution in human biology. At no other time in modern medicine have we had this opportunity to determine a person’s health risk before they develop symptoms. All of that progress can be leveraged to benefit the patient. The communities we serve are providing us with lessons about how we can choose to use technology, and how our values guide our science.
The CDC reports that, “genetic tests have been developed for more than 2,200 diseases, of which 2,000 are currently available for use in clinical settings.” Community spoke with Rebecca J. Nagy, President of the National Society of Genetic Counselors about the importance of genetic counseling for those undergoing genetic testing.
What are the different types of genetic counseling?
Genetic counselors care for patients and families with a variety of conditions that cover the entire lifespan. Prenatal genetic counselors work with individuals who have concerns around a pregnancy that may be at increased risk based on family history, exposures or the mother’s age.
Pediatric genetic counselors work closely with physicians and see infants and children who may have a genetic condition. The physician works to obtain the correct diagnosis, and the genetic counselor is there to help the family understand what this diagnosis means for the child and the family, for future pregnancies and other family members.
Some genetic counselors work in the adult setting, seeing patients who have concerns about a family history of heart disease, cancer or other adult onset conditions. All of these clinical genetic counselors (prenatal, pediatric and adult) provide support and resources to the family while they are coping with and adjusting to their diagnosis.
Finally, there are many genetic counselors who work outside of the clinical setting. Some work in laboratories and serve as a conduit between the lab and physicians, helping them understand what specific test results might mean. Many genetic counselors are involved in research, public health or administration.
(Above) Rebecca J. Nagy, President, the
National Society of Genetic Counselors
When should genetic testing for rare and chronic diseases be accompanied by genetic counseling, and why?
Learning that you or your child has a genetic condition can be difficult and emotional. It may also have implications for other family members.
By seeing a genetic counselor before testing, individuals and families can make an informed decision about whether testing is the right choice for them and can also be provided with information about the likelihood that their condition is hereditary and whether or not genetic testing would be helpful.
If genetic testing is ordered, genetic counselors can help the individual/family understand what the results mean for them and their family, and they can work together with the physician to make sure proper medical management recommendations and/or treatment plans are put in place.
Genetic counselors can also provide the family with support and resources to help them cope with the diagnosis, if necessary. For example, genetic counselors can help the family identify other families who have a child or family member with the same diagnosis and can identify advocacy and support groups that can provide ongoing information and support.
They can also coordinate referrals to other specialists and can be an ongoing resource if new developments are made in the field. Many of my patients will check back in with me each year to see if there is anything new that they should know about their diagnosis or the treatment for their condition.
What should patients, families, and caregivers look for when selecting a genetic counselor?
You can find a genetic counselor in your area by going to NSGC.org and clicking on the Find a Counselor tool. This provides a listing of board certified/board eligible genetic counselors.
Board eligible counselors have completed training at an accredited genetic counseling training program and are eligible to sit for their certification exam, which is offered twice a year. Board certified genetic counselors have also graduated from an accredited program and have passed this certification exam.
What tips can you provide for talking to family members about the need for genetic testing and counseling?
When approaching family members about the need for genetic counseling or testing, it is important to understand that not everyone in your family will want to undergo testing and counseling. And those that do undergo testing may not make the same decisions about what they wish to do with the information.
Sharing the information with family members and helping them find a genetic counselor is enough. Family members can then make their own choices about whether testing and counseling is right for them.
(Above) Blood samples at the Clinic for Special Children. Photo: Matthew Sware
Many times, genetic counselors will provide patients with a family letter that explains what testing has been done, what it might mean for family members and how to find genetics professionals in their area. This is an easy way to communicate with family members and it takes the burden off of the patient to have to contact everyone by phone and have what may be a difficult or awkward conversation.
What role do you see genetic testing and counseling playing in medicine over the next 10 to 20 years?
The demand for genetic counseling and testing will continue to rise. Genetic testing is now a part of mainstream medicine and is already being used to help diagnose and treat diseases differently than we did even five to 10 years ago.
I see this trend continuing and expanding out into other areas. Given new testing technologies such as whole exome and whole genome sequencing, genetic tests are so much more complex, which makes the interpretation of test results more difficult. It will be critical for individuals and their families to have access to genetics professionals who can interpret this complex information for them.
Look for Part II of “Family Medicine” in the Spring 2014 issue of Community, featuring interviews with rare disease specialists, including Columbia University’s Wendy Chung, M.D., who discusses genetic research on pulmonary hypertension.
The Genetic and Rare Diseases Information Center (GARD)
Created by NIH in 2002 to help people find useful information about genetic and rare diseases, GARD provides immediate, virtually round-the-clock access to experienced information specialists who can furnish current and accurate information—in both English and Spanish.
GARD has information on:
- What is known about a genetic or rare disease
- What research studies are being conducted
- What genetic testing and genetic services are available
- Which advocacy groups to contact for a specific genetic or rare disease
- What has been written recently about a genetic or rare disease in medical journals
The Genetic and Rare Diseases Information Center (GARD)
P.O. Box 8126
Gaithersburg, MD 20898-8126
Toll-free: 1-888-205-3223
http://rarediseases.info.nih.gov/GARD
E-mail: [email protected]
Genetic Alliance
This nonprofit health advocacy organization is committed to transforming health through genetics and promoting an environment of openness. Genetic Alliance’s www.genesinlife.org website provides information about health and genetics. Genetic Alliance offers “Does It Run in the Family?” a free online booklet that families and communities can download at www.familyhealthhistory.org and customize to use in collecting family health history.
National Human Genome Research Institute
Communications and Public Liaison Branch
National Institutes of Health
Building 31, Room 4B09
31 Center Drive, MSC 2152
9000 Rockville Pike
Bethesda, MD 20892-2152
Tel. 301-402-0911
www.genome.gov/Patients
National Society of Genetic Counselors
330 N. Wabash Avenue, Suite 2000
Chicago, IL 60611
Tel. 312-321-6834
www.nsgc.org
Night Vision
December 10, 2013Community unfolds the remarkable life of the Underground Railroad’s fearless conductor, Harriet Tubman, who suffered during much of her life from a chronic, debilitating disorder. Eva Leonard reports.
Araminta Ross, who later become known as Harriet Tubman, “the Conductor of the Underground Railroad,” “General Tubman,” and “Moses,” was born to Benjamin Ross and Harriet Green, one of nine children, sometime between 1820 and 1824 in Dorchester County, Maryland, on the plantation of Anthony Thompson.
Tubman’s birth year is uncertain, however a record of a payment to a midwife indicates that it was probably 1822. As an adult, she took her mother’s name, “Harriet,” and the surname, “Tubman,” when she married John Tubman.
Tubman’s father was enslaved by Thompson, while she, her mother, and her siblings were enslaved by Thompson’s stepson, the farmer Edward Brodess. As a very young child, Araminta, who was known as “Minty,” was put to work. Brodess hired her out to other landowners, who treated her cruelly, brutally whipping her, and leaving deep scars. Even when sick with measles, Tubman was forced to haul muskrat traps through frozen swamps, wearing no shoes, her feet only covered with cloth.
As a teenager, following a severe head injury—the result of her efforts to protect another slave—Tubman developed a lifelong, chronic condition, with debilitating symptoms that have been described as being similar to those of narcolepsy and temporal lobe epilepsy.
(Above) Freedmen laborers at Quartermaster’s Wharf, Alexandria, Virginia. African-American dockworkers and mariners taught Harriet Tubman to follow the North Star to freedom. Photo: Mathew Brady, U.S. National Archives and Records Administration (Below, right) A two-pound counterweight of the type that fractured Tubman’s skull, causing her life-long disability. Photo: Eva Leonard
At the local general store, she had encountered an unidentified young male slave, there without permission. An overseer ordered Tubman to restrain the young man, and hurled a two-pound counterweight at him. Instead, after he darted out of the store, Tubman blocked the doorway. The weight hit Tubman in the head, fracturing her skull and nearly killing her.
Recovering from the blow without medical care, she was forced back to work only two days later, as her head bled from the injury. After the injury, Tubman began to experience uncontrollable episodes, which could happen several times a day, as she fell into a motionless, dream-like state, lasting from half an hour to an hour, during which she hallucinated.
The attacks occurred without warning, even in the middle of conversation. When an attack ended, she resumed the conversation where it had stopped. Tubman described the hallucinations as “visions,” in which she sometimes saw herself flying above the earth and over water.
Kate Larson, author of “Harriet Tubman, Portrait of An American Hero: Bound for the Promised Land,” says that during these states, Tubman also heard the sounds of voices, screams, music, and rushing water, and felt as though her skin was on fire, while still conscious and aware of what was going on around her. She also experienced extreme, debilitating headaches, and became increasingly religious after the injury.
Initially, Tubman’s injuries made it difficult for her to work and lowered her value as a slave, and she was returned to Brodess. But she grew stronger as she recovered and worked digging out stumps, plowing fields, chopping wood, and hauling timber.
In 1844, at the age of 25, she married John Tubman, a free black man. When Edward Brodess died in March of 1849, he left his wife, Eliza, deeply in debt. Fearful that Eliza Brodess would further split up her family by selling them South to work on chain gangs to pay the debt, Tubman escaped to Philadelphia later that year. (She had watched her two older sisters, Linah and Soph, sold out of state as part of a chain gang when she was younger.)
She traveled the approximately 90 miles to Philadelphia on foot, at night, following the North Star, which she had learned of from the African-American dockworkers and mariners she befriended as she loaded and unloaded produce at the wharves. The mariners served as a vital link in the Underground Railroad’s communication network, delivering coded messages and providing information about the outside world for those seeking freedom.
On her way to Philadelphia, Tubman stopped at Underground Railroad safe houses, where she was fed, sheltered and directed to the next house by Quakers and black and white abolitionists.
Tubman described her emotions on finally crossing the border into the free state of Pennsylvania: “I had crossed the line of which I had so long been dreaming. I was free, but there was no one to welcome me to the land of freedom. I was a stranger in a strange land, and my home after all was down in the old cabin quarter, with the old folks, and my brothers and sisters. But to this solemn resolution I came; I was free, and they should be free also; I would make a home for them in the North and the Lord helping me, I would bring them all there.”
In Philadelphia, and in Cape May, New Jersey, Tubman found work as a domestic, and as a cook in hotels, earning money to return to Maryland and bring her family to freedom.
In 1850, Tubman made her first trip back to Maryland to retrieve her niece and her niece’s son and daughter. In 1851, she came back for her husband, John Tubman, but discovered that he had remarried and did not want to join her. Instead, she found a group of slaves eager to leave, and brought them to Pennsylvania with her.
During an estimated 13 trips, over the course of a decade, Tubman brought at least 70 slaves, including many family members, to freedom, never losing a passenger. Following the passage of the Fugitive Slave Act of 1850, it was no longer safe to end the journey in the northern states, so Tubman began to bring her passengers to Saint Catharines, Ontario, Canada, where she moved in 1851.
In 1854, Tubman sent a coded letter through a friend to Jacob Jackson, a free, literate black man who lived near Tubman’s family in Maryland. The letter alerted Tubman’s three brothers to her plans to return and bring them back with her to Philadelphia. In 1857, she also brought her elderly parents to freedom.
Tubman led her escapes at night, following the North Star, using a variety of strategies to evade detection and capture. On one trip she disguised herself as a man, and on another, she carried chickens to make it look as though she were running errands. She sometimes wore a silk dress to appear a free, middle-class woman, and she often led Saturday night departures because “Wanted” posters could not be printed until Monday mornings, giving her a one-day head start.
Tubman carried the drug paregoric to prevent babies from crying during the trip. She also packed a pistol as protection against slave catchers, and as a warning for passengers who might be tempted to abandon the escape and turn back. Tubman was fearful that if they did turn back, they would divulge what they knew about the Underground Railroad.
In a December 29, 1854 letter, Thomas Garret, Wilmington, Delaware Underground Railroad Stationmaster wrote to J. Miller McKim: “We made arrangements last night, and sent away Harriet Tubman, with six men and one woman to Allen Agnew’s, to be forwarded across the country to the city. Harriet, and one of the men had worn the shoes off their feet, and I gave them two dollars to help fit them out, and directed a carriage to be hired at my expense, to take them out….”
In 1859, Tubman moved to Auburn, New York, purchasing a house from her friend, Senator William H. Seward, and bringing her parents with her. She would also open her home to other relatives, as well as friends and former slaves.
After the Civil War began in 1861, Tubman worked with the Union Army in South Carolina, Virginia, and Florida as a scout, spy, leader, and nurse. Known for her abilities as a healer and a caregiver, Tubman brought ill soldiers back to health, using herbal treatments she knew from growing up in the Maryland countryside, and drugs she had learned about from Edward Brodess’s stepbrother, a doctor who ran a pharmacy. To heal soldiers who were sick, and in some cases, dying, from dysentery, she treated them with a tea she brewed using herbs and roots with medicinal properties.
Disguising herself as a sick, elderly woman, she performed reconnaissance for the Union army in Confederate towns. In 1863 Tubman scouted and planned for the Raid at Combahee Ferry, commanded by Colonel James Montgomery, and led 300 black soldiers during the raid, which freed more than 700 slaves in South Carolina. Tubman also recruited volunteers for John Brown’s raid on Harpers Ferry, West Virginia, but was unable to join the raid.
In 1869, Tubman married Union Army veteran Nelson Davis, whom she had met in Auburn. Despite her own accomplishments, Tubman was for many years denied her own military pension, although she received one as Davis’ widow after he died. She finally was granted one for her own service in 1899.
Sometime during the late 1890s, Tubman had brain surgery at Boston’s Massachusetts General Hospital to relieve the pain she had dealt with much of her life from her childhood injury. Although details are scarce, the operation gave her some relief from the symptoms caused by the blow she had received some 60 years earlier.
In 1908, Tubman founded the Harriet Tubman Home for the Aged in Auburn, New York. Her friend and neighbor Helen Tatlock said that at her home, Tubman took care of “the demented, the epileptic, the blind, the paralyzed, [and] the consumptive.” When Tubman herself grew frail, she would be cared for in the home she had established.
When Harriet Tubman died of pneumonia in 1913 in Auburn, New York, she was buried with full military honors at Fort Hill Cemetery. Nearly fifty years earlier, the abolitionist Frederick Douglass, had written in a letter to Tubman: “The difference between us is very marked. Most that I have done and suffered in the service of our cause has been in public, and I have received much encouragement at every step of the way. You, on the other hand, have labored in a private way. I have wrought in the day—you in the night. … The midnight sky and the silent stars have been the witnesses of your devotion to freedom and of your heroism.”
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