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MyStory
Archive 2004 - 4
Q: How did you find out that you had a primary immune deficiency? From birth, Chris was congested, having a combination of asthma, bronchial infections, and constant sinus infections. Even his belly button did not heal properly, so cauterization was necessary. After repeated infection, breathing difficulties, asthma, croup, bronchitis, and tests, it was evident that Chris needed to be seen by an immunologist. Q: How often are you (or your child) infused? Chris has his home infusion of intravenous immunoglobulin (IVIG) for eight hours once every three weeks. Chris spends the time watching TV, playing video games or board games, eating, reading, doing homework, or spending time on the computer. Q: Describe your experience with your immunologist? Our first experience with an immunologist was frustrating. It was complicated, since Chris is IgA-deficient along with having common variable immune deficiency (CVID). In the beginning there were conflicting recommendations for treatment. Our pediatrician was reluctant to administer IVIG, but we figured things out and are fortunate to have an allergist and immunologist familiar with the disease. Q: Have any organizations or support groups helped you cope with this chronic disease? The Centers for Disease Control and Prevention (CDC), National Institutes of Health, the local library, Immune Deficiency Foundation, public health department, and the FDA. Q: Can you suggest any Web sites where you have found helpful information about primary immune deficiencies and the therapies used to treat them? I visit many Web sites to learn about what is new in the medical field as it relates to primary immune deficiency. A few are: Immune Deficiency Foundation, National Institutes of Health, and NIH Clinical Trials. Q: What's the most difficult part about living with a primary immune deficiency (or caring for a child who does)? As a parent, I run into constant challenges and problems. An example would be the smallpox vaccine and how it would affect Chris. I try to remain positive. It is difficult to realize the vulnerability of the disorder and to rely on your faith for strength and perseverance. Q: What advice would you give a person newly diagnosed with a primary immune deficiency (or the parent of one)? What advice would you give to that person's family? Research and resources are necessary, with moderation. Seek out good medical care, a knowledgeable immunologist and nurse. And a relationship with your insurance company and understanding of your policy are a must. Be your own advocate. Find support and peace to live well. If you get the proper treatment, you can have a fairly normal life expectancy. The trick is first being diagnosed. Q: Describe your experience with your insurance company? We have a sole proprietary policy – a conversion policy from COBRA enforced by a company restructure in 1994. Most of the family resources are devoted to keeping the child well and stable. Those of us with chronically ill family members find that our credit is destroyed because you can't meet all your obligations. Face it, if it comes between paying a utility bill and buying medication to keep your child alive, there's no choice. Q: Is there any "silver lining" to having this condition? Yes, closure in having a diagnosis. Also meeting other families and patients gives one a true sense of knowing and understanding. There is much support in realizing your providence is the perseverance of faith. Q: What improvements in your IVIG would you like to see from processors of IVIG therapies? I would like to see a truly safe product. Other improvements could be needle-less infusion access, viral safety measures, and improved donor screening. Additionally, I would like to see education for patients, families, donors, and manufacturers. This might bring them together to work more closely and improve product and processes. |
Note:
This interview features a person with a primary immune deficiency.
It was not written by a healthcare professional and is not meant
to replace the expert care of a qualified physician. Please consult
your physician with any questions you might have about your health.
