By Linda
I love my sister, she is the oldest of the five siblings. She was diagnosed several years ago at the Mind Institute. When we think about fragile x awareness day we also think about the ones affected as carriers too.
My sister has FXTAS. She has very little tremors and has her good days and bad with balance. But she does well. Her kids are remarkable at reminding her to slow down and come and help her sometimes with big chores. She is my idol. Love You Sis.
I forgot, My sister has FXTAS. She has very little tremors and has her good days and bad with balance. But she does well. Her kids are remarkable at reminding her to slow down and come and help her sometimes with big chores. She is my idol.
Hi Linda, I’ll add this to the story. Thanks so much for sharing this!
You are the most wonderful husband too! She has you there. All the time, bless your heart!
family support means everything (I know!) And she is so lucky to have that, too!
Linda, I would love to communicate with your sister. I, too, have FXTAS and have never met anyone else who has it. It would be wonderful to have a support group. Joy
Joy, I have FXTAS, too. Balance is my main problem. No tremors. Memory is a little fuzzy. I’m 65 and found out about 3 years ago. I thought I might have MS so my neurologist ran tests and found the fragile x gene. My brother died 30 years ago from MS. But now I think he may have full blown fragile X. I live in California. Where do you live?
Hi,
I am 7th from 13 siblings. 60 years in December 2012. I have a son with full X-Fra mutation and myself more than 100 repeats. For some 2 years I have problems with balance and memory loss. For about 8-6 months I have also difficuties to find my words and mental confusion. I live in France but I am Finnish of origin. Sometimes I use finnish or english words when I can’t find french. Fortunately my husband understands all.
I would be happy to learn more about the symptoms of your sister if possible.