Five adult siblings tell us about their experiences of genetic screening and genetic counselling.
- “I’ve had genetic screening and genetic counselling twice, the first time I was 16 to see if I was a carrier for the DMD [Duchenne Muscular Dystrophy] gene. I would want someone to know that there is no shame in wanting to protect a potential child from what you see your sibling going through, and to go easy on yourself. It’s an emotionally difficult process to go through and can bring up a lot of anxiety and worries. I fortunately wasn’t a carrier and I now have two children who are both healthy but my son has LD [learning disabilities]. It took me a long time to make my peace with having children and embracing whatever comes. My mum wasn’t a carrier either so it was a one in a million chance of my brother having had DMD, so that played on my mind a lot. I don’t regret having the testing done at all, but I would say it’s a very personal choice and it should feel right for you regardless of anyone else’s opinion”
- “I have too been through it, unfortunately no biomedical reason was found for my brother’s disability – there is still a lot undiscovered. So I could not move forward. Glad I did it, just wish I had answers”
- “I had genetic screening during my pregnancies as my older brother has Down’s Syndrome as well as my cousin. I wanted to be prepared. I now have three children, none have Down’s. I am now a full-time carer for my brother, as both parents died, and I have a different perspective. Had any of those tests come back positive it wouldn’t have made a difference, with time my feelings have changed. I love my brother but caring for someone who has the mental age of a 5-year-old and is now incontinent is extremely tough while also having a family. Making decisions about potential children and their future doesn’t make you selfish. You are allowed to not choose that. You know what you can deal with and what you want your life to look like. Choosing your own future doesn’t mean you love your sibling any less. Make informed choices. There’s plenty of support for disabled children, adults not so much.”
- “I had genetic screening fairly soon after the faulty gene that caused my sister’s disability was discovered. For me it was about avoiding the pain, heartache, exhaustion and total life takeover that my sister’s disability has meant for my parents. That absolutely does not mean that my sister isn’t amazing, and that I don’t love her very much. However, having already grown up alongside someone with profound disability, I wanted to at least have warning of the possibility of having a child like that myself. There is a lot of truth in the fact that there is a great deal of funding and support for disabled children, but not for disabled adults, and we all know that the commitment to a disabled child is lifelong. As a sibling, we are in a position to have witnessed this first hand. I do not regret having the testing at all. The result was negative, which told me that I had as much chance as any other person of having a disabled child, and that was a huge relief to me.”
- “I think this is a big topic for those of us sibs whose family is affected by a genetic condition. It raises all sorts of questions… I think I was probably about 7 or 8 when I first knew my sibs disability was genetic and that I could be a carrier. That is a heavy thing to know at a young age, and it probably (?) isn’t appropriate to get tested until you have a bit more maturity, but it means you carry that for quite some years. I had testing when I was about 20. Initially, they didn’t know the exact mutation my bro had. They could tell me that I had inherited the same chromosome, but didn’t know if I had the problem mutation. A few years later through further research they found his mutation and could then tell me that I didn’t have it. But it was overall about 15 yrs of not knowing. I think there are all sorts of wider issues like who do you tell, whether/how you talk to your sib about it, people often ask (if they know the name of the condition) ‘Oh have you been tested for that?’, which is quite personal. How does it affect your dating/relationship situation when growing up/in adulthood, etc.”