Approved Use: Aquam volupis quat que est et que qui quam que od quiantium ipsanias dolupiet exernam quo millibus acilis dolor sumque volor sim fugit, is nobit Orrovid. READ MORE
Aquam volupis quat que est et que qui quam que od quiantium ipsanias dolupiet exernam quo millibus acilis dolor sumque volor sim fugit, is nobit Orrovid: READ LESS
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:
Hear Kelsey's experience with DHR testing and monitoring as an X-linked carrier.
DHR Testing for X-linked CGD Carriers.
When I’m conversing with my doctors or specialists about being a carrier of CGD and having symptoms, it’s brushed under the rug, so to speak. I don’t look physically ill. You need to monitor every now and then to check in with your DHR levels. Know your DHR values and risk of infection.
What is a dihydrorhodamine, or DHR, test? A DHR test can distinguish if someone is an X-linked CGD carrier, determine how well the immune system is working, and determine the risk of infection for X-linked CGD carriers.
According to one study, up to 23% of X-linked CGD carrier had a history of significant infections.An X-linked CGD carriers’ risk of infection can increase over time
It was my son’s initial diagnosis of CGD; they did a DHR blood test to confirm that I was indeed an X-linked carrier of CGD and let me know my DHR levels. They gave me a number, and I didn’t really know what that meant, and I didn’t know that could change or become worse over time.
How is a DHR test performed? It’s a blood test.
How often should an X-linked CGD carrier get a DHR test? Every 1 to 2 years to monitor risk of infection.
How do you get a DHR test? Ask your doctor for a DHR test.
Talk with your doctor about your test results and what that means for your risk of infection.
When DHR levels are less than 10% there is a highly associated risk of infection.
Key to CGD has been a huge help. It has a lot of resources for DHR testing. Don’t wait. Get tested.
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.
