Connecting with carriers of chronic granulomatous disease (CGD)Read the full video transcript
So I learned at a very young age that I was a carrier. When I realized that I was a carrier of CGD, it made me think differently on my life future and having more children. And the effects of if I did have another child of it having CGD or not having it.
After Ricky was diagnosed with CGD, they said that it had to come from somebody in the family. And so our whole family went down to the university, and we all got tested. When the doctor came in he sat down, and he just put his paper down on the desk, and then he said, “it looks like you’re the carrier.” You kind of feel guilty in a sense when you’re a carrier. You know, when you’re a mom that loves kids.
The advice I would give CGD moms is not to be so hard on yourself. I’ve had the experience of talking to moms. And I know this from speaking with my mother that there is a lot of guilt associated with this disease. My mom has felt that way because it’s passed down.
I was adopted. So I had no clue of any of my past medical family history at all. So there was just a big blank there. When I was a kid, I always had the butterfly rash. And I remember having joint pain. I have seen physicians, and I’ve actually been seen at the lupus clinic.
I think I started getting symptoms maybe about probably 10 years after I was diagnosed. I started noticing little bumps like my sister’s. She had lupus. And I’ve noticed the older that I get too, if I get a cold or something, it seems to settle in my chest longer.
Advice that I would give to another parent of a child with CGD would be if they started having symptoms, that they were seen by a physician to find out what’s going on with their system because as a parent, you have to be healthy to take care of your child.
And I would tell CGD moms it is absolutely not your fault. And I think they need to hear that. And I think they need to understand that despite everything that the child is going through, they could not do it without the support of the parents and the moms especially. I could have not survived without my mother.
Women carriers of X-linked CGD can be affected both emotionally and physically. Many times there’s a sense of guilt, frustration, and confusion as to why this has happened to them. Without proper help, these feelings may lead to depression and hopelessness. Watch the video above to hear stories from other X-linked carriers about how they manage taking care of themselves and their child with CGD.
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