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Image of extended family sitting and talking about CGD

Talking with family

Educating family members about chronic granulomatous disease (CGD) and genetic testing can help them understand the potential impact on generations to come.

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.

Respect each other’s perspectives
While the decision to be tested for CGD might seem clear or even obvious to some people, not everyone will share that opinion. Make sure to start a conversation by being receptive to a family member’s concerns and point of view.
Be open and honest
Acknowledge up front that this is a difficult conversation to have and that being honest with each other about reservations or fears is the best way to move forward.
Be supportive
A CGD diagnosis and all of the information that comes with it can be difficult news to absorb. Be a supportive ally to family members while they sort through complex emotions associated with a CGD diagnosis.
Acknowledge barriers
Every family is unique and may face different barriers getting a CGD diagnosis. They may have difficulty finding a specialist, be in denial about their symptoms, or have a misunderstanding about the cost of testing. Whatever the case may be, try to acknowledge those barriers and offer helpful information and encouragement.
Focus on what can be controlled
If a family member is feeling guilty regarding a CGD diagnosis, it’s helpful to remember that no one controls the genes they inherit or pass on. They are simply a part of the person, not something to be blamed for.
Be prepared
Approach the conversation ready with information to share about CGD and testing. If a family member wants to know more, that information is ready to help point them in the right direction.

Conversation starters and tips

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.

Conversation starters

Starter: “My sister told us she is thinking about starting a family soon.”

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?"
Starter: “My aunt has been complaining about symptoms that I know are common for X-linked CGD carriers.”

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.”

Conversation resistance

Resistance: “I’m not talking about it.”

Response: “It’s important to talk about CGD and testing. Our family’s health may be at risk if we don’t communicate.”
Resistance: “Our side doesn’t have it.”

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.”
Resistance: “I doubt I’m a carrier.”

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.”
Resistance: “We don’t talk about that”

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.”
Resistance: “I don’t want my personal health information shared with the world.”

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.”
Resistance: “I can’t afford to have expensive tests done.”

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.”

There may be barriers to getting tested, but there are also easy solutions to offer

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.

See CGD testing information and resources.

Find your local CGD care team

Locate specialists in your area for CGD care, information, and resources.

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Talking with family

Conversation starters and tips

Conversation starters

Starter: “My sister told us she is thinking about starting a family soon.”

Starter: “My aunt has been complaining about symptoms that I know are common for X-linked CGD carriers.”

Conversation resistance

Resistance: “I’m not talking about it.”

Resistance: “Our side doesn’t have it.”

Resistance: “I doubt I’m a carrier.”

Resistance: “We don’t talk about that”

Resistance: “I don’t want my personal health information shared with the world.”

Resistance: “I can’t afford to have expensive tests done.”

There may be barriers to getting tested, but there are also easy solutions to offer

Find your local CGD care team