Agammaglobulinemia, x-linked


How do I find a center of excellence in X-linked agammaglobulinemia?

One of the best ways to find a treatment center or physician with experience in treating a rare disease like X-linked agammaglobulinemia is to contact a support group. The Immune Deficiency Foundation and the Jeffrey Modell Foundation, and the International Patient Organisation for Primary Immunodeficiencies are support groups that provide such information and referrals for X-linked agammaglobulinemia.

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What specialist doctors should I see with X-linked agammaglobulinemia?

What specialist doctors should I see with X-linked agammaglobulinemia?

People with X-linked agammaglobulinemia should be seen at a medical center with experience in treating the disorder. They will be seen by an immunologist. This is a specialist who works with disorders that affect the body’s immune system. Many hospitals have an immunology departments. The medical team at the immunology center will come up with a plan for treatment for you or your child. They will work with your primary care physician to manage treatment. Other doctors may help as well. If someone has repeated respiratory infections they may need to see a doctors who knows about the lungs, called a pulmonologist. If someone has lots of infections of the stomach and intestines, they may need to see a specialist for those areas, called a gastroenterologist. Infections that damage the skin may need to be treated by a dermatologist.


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