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70% of X-linked CGD carriers report mild/moderate symptoms, but today, only half are followed by a CGD specialist. Talking to a doctor about your symptoms, and getting tested, can help ensure you understand what CGD means for you.
You’re not alone. Get information and support for X-linked CGD carriers.
CGD affects the ability of the immune system to fight off certain harmful bacteria and fungi that cause infections. For some X-linked CGD carriers, the immune response may be similar to that of a typical X-linked or autosomal recessive patient, and require treatment.
A dihydrorhodamine (DHR) test is a blood test that can help determine how well your immune system is working. Both patients with CGD and X-linked CGD carriers benefit from a DHR test, but for X-linked CGD carriers, regular testing is essential.
DHR testing helps your CGD specialist determine:
DHR results tell your healthcare team the proportion of white blood cells in your immune system that are responding to, and fighting off, harmful bacteria and fungi. This is your DHR level.
A typical X-linked CGD patient often has a DHR level below 20%. An X-linked CGD carrier with a DHR level below 20% may have a significant risk of serious* infection.
DHR results help you understand your infection risk, but they don't predict symptoms. Managing CGD means tracking both—and working with a specialist to complete the picture.
It’s critical to monitor your symptoms and get regular DHR tests either every 1-2 years or if your symptoms change. By doing so, you and your CGD specialist will be well-equipped to understand your risk of infection and manage CGD proactively.
*An infection is serious if you have to go to the hospital and/or get intravenous (IV) antibiotics.
Talk to a healthcare provider online to learn more about DHR testing.