Tag Archives: Chronic Granulomatous Disease
Helpful Resources
July 22, 2014Partnerships
Caring Voice Coalition has partnered with LegalShield to offer CVC patients discounted legal plan membership. For a small, flat monthly fee, CVC patients can become LegalShield members, with access to services including unlimited legal advice on any topic, living wills, estate planning, health care proxies, insurance coverage, and identity theft protection. With LegalShield, CVC patients have access to caring, top-quality attorneys from highly-rated law firms across the country at very low cost.
NeedyMeds, founded in 1997, is a non-profit information resource devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care.
Patient Associations
- Alpha-1 Foundation
- Chronic Granulomatous Disease
- Complex Partial Seizures
- Cutaneous Lymphoma
- Factor XIII
- Gaucher’s Disease
- Huntington’s Disease
- Idiopathic Pulmonary Fibrosis
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Copayment Assistance Organizations
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Government Agencies and Programs
- BenefitsCheckUp
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Transplant Information
Posted in How We Help | Tagged Alpha-1 Foundation, BenefitsCheckUp, CancerCare, Chronic Granulomatous Disease, complex partial seizures, Cutaneous Lymphoma, factor XIII, Gaucher’s Disease, HealthWell, Huntington's Disease, idiopathic pulmonary fibrosis, Infantile Spasms, Lennox-Gastaut, Leukemia and Lymphoma Society, Medicaid, Medicare, narcolepsy, National Foundation for Transplants, National Institutes of Health (NIH), NORD, Patient Access Network Foundation, Patient Advocate Foundation, Patient Services Inc, Pulmonary Hypertension, Social Security Administration, Thalassemia Syndromes, The Assistance Fund, United Network for Organ Sharing, UNOS | Leave a commentSupported Diseases
June 9, 2014CVC Disease Funds
Alpha-1 Antitrypsin Deficiency
Chronic Granulomatous Disease
Complex Partial Seizures
Cutaneous Lymphoma
Factor XIII Deficiency
Gaucher’s Disease
Huntington’s Disease
Idiopathic Pulmonary Fibrosis
Infantile Spasms
Inflammatory Eye Disease
Lennox-Gastaut Syndrome
Myositis
Narcolepsy
Nephrotic Syndrome
Orthostatic Hypotension
Pulmonary Hypertension
Sarcoidosis
Severe Chronic Pain
Steven-Johnson Syndrome
Thalassemia Syndromes
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August 20, 2013Give Financially
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Living with Chronic Granulomatous Disease (CGD)
March 1, 2013
Easton, left, and Owen Jouppi
Twin boys Easton and Owen Jouppi were diagnosed with CGD a week before their first birthday. Here, the boys’ parents, Nicole and Mike Jouppi, discuss what it means to care for two children living with this chronic illness.
Their story, in their own words.
We had Owen and Easton on May 21, 2010 and on April 14, 2011 just a month before their first birthday, they were both diagnosed with CGD.
They weren’t meeting milestones that typical infants should meet. They weren’t gaining weight or eating food. There was a very clear failure to thrive.
Owen developed perirectal abscesses, and that’s something that males with CGD will get. Sometimes they will have cysts on their legs and arms, or have reoccurring pneumonia. About a month later, Easton began getting the abscesses too. Owen would lose weight as quickly as he gained it. Our pediatrician referred us to a gastrointestinal doctor who monitored Owen for a couple of months and after trying a few medications, the doctor ordered the CGD test.
They ordered the test on Easton as well because the two are identical, and the thought was if one of them has it, they both might. And they both did.
A few months later, the boys had eye surgery and the gastro doctor ordered an endoscopy and a colonoscopy. After that, we found out they not only had CGD, but chronic colitis as well.
If males get chronic colitis in addition to CGD, they don’t typically get it until later in life. Owen and Easton were 13 months old.
In CGD, the white blood cells don’t work properly. A white blood cell encases an infection and breaks it down, their white blood cells encase the infection, but do nothing with it. So infections get bigger and bigger. Basically, their bodies can’t fight off bacteria or fungal infections, so they can’t be in sandy environments, dirty areas, things like that. They don’t have to live in a bubble, but they need to be very careful.
Males have an XY chromosome and females have an XX chromosome. Females don’t get CGD often because they can cancel out the bad X, but because males have the XY chromosome, they are more at risk. After the boys were diagnosed, we learned that Nicole had been the carrier of the CGD, and she had gotten it from her mother. CGD is typically inherited through the mother, so it made sense.
The way we understand it, if a female has CGD, then her mom and dad both were carriers of it, but for males, only the mother has to be a carrier.
One of the things is that if you and I get sick, we show it on the outside. But if they’re sick, they look healthy as can be. Completely normal on the outside, but very sick internally.
Because the boys aren’t old enough to fully understand the disease, they have to be monitored constantly, which can make day care and play dates difficult. If a two and a half year old sees a kid playing in the sand, then they want to go play in the sand with them. Owen and Easton can’t do that.
Nicole actually ended up quitting her job so she could stay home with the boys full time. We realized it was going to be too difficult to put them in day care. There are the many safety precautions, but also several steps for the medication as well. It’s a very strict regimen.
We still hold out hope that they will be cured, but the only cure is a bone marrow transplant or stem cell, which is not highly recommended unless you become seriously ill. But we remain hopeful for the future.
But after all of this – the medications and safety concerns and so on – Owen and Easton are just two boys. Two boys who like to chase each other around, play with toy cars. They love going to the playground, but just have to be a little more careful than some of the other kids. It’s great to finally see them healthy and just acting like little boys. For such a long time it was such an uphill battle and struggle for them. And although we’re still learning about what they can and can’t do, it’s nice to see boys being boys.
Click here to learn more about CGD.
Posted in Diseases, Featured, How We Help | Tagged CGD, Chronic Granulomatous Disease | 12 Comments
