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CGD is a rare, inherited disease that may affect immediate and extended family members physically. A CGD diagnosis can also have emotional effects on all family members. Not all family members will be open to talking about genetic conditions—every family member can have a different opinion and perspective, and navigating those conversations isn't always easy.
It can be hard to find the right time to start the conversation about CGD with immediate or extended family members. That’s why coming prepared with conversation ideas and information may be helpful. Education is key when talking about CGD with family members. Select example situations below to see potential scenarios, approaches, and next steps.
Response: "Congratulations, that’s so exciting! You are going to make a great mom! Now that you are considering having kids, maybe it’s a good time to speak with your doctor about testing for CGD to see if you’re a carrier. Have you had a chance to do so?"
Response: “I’m sorry you’re not feeling well. I recognize some of the symptoms you’re describing, because I’ve had issues with [insert symptom[s]] as well. Since CGD is genetic and runs in families, you may want to discuss your symptoms with your doctor. For me, it was worth discussing with my doctor and getting a dihydrorhodamine (DHR)/genetic test for CGD. Now I know where my symptoms are coming from, and I can work with my doctor to manage them much better. I can give you a referral if you’re interested.”
Response: “It’s important to talk about CGD and testing. Our family’s health may be at risk if we don’t communicate.”
Response: “CGD is an inherited genetic disorder. My diagnosis was confirmed with a genetic test and that means my immediate and extended family could also be affected by CGD.”
Response: “I understand not wanting to be a carrier, but CGD is a genetic condition, and we can’t control which genes we inherit. The only way to be sure about your status is to be tested.”
Response: “Maybe in the past we have ignored talking about our health, but I think it’s important we try to make a better effort now that I have had my own CGD diagnosis confirmed.”
Response: “Me either! But remember: Genetic test results are protected under the Health Insurance Portability and Accountability Act (HIPAA) of 1996. Nobody but you and your doctor will know your test results.”
Response: “Luckily, there are no-cost testing options that are available to you and me. You should bring it up with your doctor and see what they advise.”
Send a letter
Consider writing a letter to immediate and extended family members as an option for getting the word out to more people.
Share no-cost testing options
Information about both dihydrorhodamine (DHR) and genetic testing options is available to share on this site.
Locate specialists in your area for CGD care, information, and resources.
