"You become more understanding of other people's difficulties": Lou's experiences

​This article summarises an interview with Lou (age 45) about her experiences of living with the Fragile X premutation, which was conducted as part of a recent study. ​

Can you tell me a bit about yourself and your family?

So I am married and I have three boys. My fist two children developed normally, but my third son had developmental delay but he also had some physical problems as well. So for a while we weren’t sure if his delay were due to his physical problems, but when he was about two and half we had it looked into and he was found to have Fragile X premutation. So as a carrier he was also showing symptoms, and that’s when I found out that I too was a carrier.

What about hobbies, career?

Well, I am a maths teacher. I have taken time off to look after the children, so I have just done some bits of work really. I also do some volunteer work for the NSPCC.

As for hobbies, I like to run. So I do a bit of running to keep fit. I like to go out with friends, go for dinner and things like that. One of my husband’s hobbies is sailing on small boats, so we tend to do that sometimes on the weekend. We used to go walking, like climbing hills and such but we can’t do that now much because of the children.

Can you tell me a bit about your childhood; what was your social environment like?

I have always had quite a lot of friends. I mean, a few years into secondary school I did develop a smaller group f friends and we are still friends now. I never had problems with socialising, that it’s in fact one of my stronger points, really. Wherever I have been working or I when I have travelled a bit, I have always found it very easy to make friends. I was a little shy when I was kid, but I never thought it was anything out of the ordinary since it was more like being shy in new situations, otherwise I was quite sociable.

We have found from research, that some women face mental health issues due to the premutation. Is that something you identify with? Do you think these difficulties are linked to the premutation?

Well, I have had one time in my life, a period when I suffered, not really depression, but it was a very upsetting time. I was about 27, and a lot of things happened in my life all together, and I had what I suppose you could call a breakdown. But I managed to function, I kept on working and I was never kind of, diagnosed. But for me it was just a significant time of my life and it took me a while to rebuild again. But that was just one time, and never ever before have I faced depression. I mean I know lots of people suffer bad times in their lives for different reasons, so I don’t know if you can classify it as depression or even if you can put it down to the premutation. I don’t know. I don’t know if anyone else (without the premutation) might not go through something similar if they faced all those circumstances together.

I think I have a propensity for anxiety, and that maybe could be because of the premutation, but I manage it well. But honestly before I found out about the premutation, I just thought that I was a bit of worrier.

What are some of the positive impacts of finding out about the premutation?

I think it makes me more sympathetic and understanding to others, I think so. We all get complacent about coming from a perfect genetic pool, and then finding out that you are not so genetically perfect is hard. So you become more understanding of other people with difficulties.

To read more about the findings of the research study, for which this interview was conducted, click here.

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