I’m 66 years old and have a son 43 years old. He was diagnosed with fragile X at the age of 13. My grandmother , my father’s mother tested positive for fragile X when she was 82 years old. I understand this is passed from father to daughter, from daughter to son. Several diagnosed with fragile X in my family. I have tremors in my left hand, have problems with balance. So glad there is help out there. Thank you
Thank you sharing this video. It's helping me to understand the progression of premutation carriers problems. I'm glad that Scott found some help in treatment of FXTAS.
Great interview! I am a carrier of a premutation with "only" 65CGG Repeats. I am diagnosed with an essential tremor, but FXTAS was not ruled out for me in the future. 27, male.
I wouldn’t mind signing up for studies, but I can’t even get a doctor to donate his signature. I have all symptoms right down to the rare fingerprints, but I can’t get tested...even though my insurance has already approved it and the local Children’s Hospital of KD has agreed to test me regardless of my quintarian age.
I’m 66 years old and have a son 43 years old. He was diagnosed with fragile X at the age of 13. My grandmother , my father’s mother tested positive for fragile X when she was 82 years old. I understand this is passed from father to daughter, from daughter to son. Several diagnosed with fragile X in my family. I have tremors in my left hand, have problems with balance. So glad there is help out there. Thank you
Thank you sharing this video. It's helping me to understand the progression of premutation carriers problems. I'm glad that Scott found some help in treatment of FXTAS.
Great interview! I am a carrier of a premutation with "only" 65CGG Repeats. I am diagnosed with an essential tremor, but FXTAS was not ruled out for me in the future. 27, male.
Same 65 repeats premutation 32 female with tremors
@@hypergirl9266 Any other effects?
Thank you for sharing the video! What is Scott’s CCG repeat?
I wouldn’t mind signing up for studies, but I can’t even get a doctor to donate his signature. I have all symptoms right down to the rare fingerprints, but I can’t get tested...even though my insurance has already approved it and the local Children’s Hospital of KD has agreed to test me regardless of my quintarian age.
I went to the registry address shown where is said page not found-error.
Here is the link fragilex.org/our-research/projects/premutation-registry/
I am a carrier with 180 repeats. My sister, her daughter and 2 grandsons are Full Mutation. I am very interested in participating in studies.
Here are some current studies at the UC Davis MIND Institute health.ucdavis.edu/mindinstitute/research/fragilex/fragilex-current-research.html
Does SHE ↗️ have Fragile-X?