Hi there, my mum was diagnosed in 2020 with CBD. She is the third generation in my family to be diagnosed with a neurological degenerative disease. She is very unsteady on her feet, her speech is slurred, her sentence structure isn’t good and she has lost use of her right arm/hand.
If I was to say I’m not concerned about my own potential future diagnosis I would be lying. If anyone has any info about genetic testing or research studies to be involved in I would be greatly appreciative. I want to be proactive about this and help raise awareness and just talk openly about degenerative diseases because I feel like no one (other than this forum) talks about them.
Thank you!
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Lottie149
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Hi Lottie149 - do you know more about what neuro diseases? There are some quite different causes to the different diseases so although diseases might have similar effects they will be caused differently and so there wouldn’t be a genetic component. A genetic link isn’t completely ruled out with CBD just because there isn’t enough known about it, but so far the general view seems to be that it’s extremely unlikely.
Do use this forum as there is a lot of helpful advice and people in similar situations who can understand better than anyone else. My mum has CBD too, but she wasn’t diagnosed until her 80s though she probably had symptoms earlier. She now has symptoms of PSP too as the diseases often merge together at a later stage.
I am read there are "families" of neurological diseases with no apparent relationship to other "families" such as PSP. Thus the Altzeimer "family" includes a group of similar diseases with many common aspects but with some differential symptom or symptoms. The same happens with PSP of which up to 9 variants have been described. some of them extremely rare. The same goes for other neurological diseases.
PSP diseases are believed to have a genetic cause which is not inherited, with the possible very rare exceptions. Familial diseases are inherited diseases. Only 5% of all cases of PSP are familial
I play a comment from Kevin_1 (08-2019):
“PSP and CBD are not inherited. There was one small study that thought it identified 'clusters' of families who had a higher than the normal rate of this group of illnesses. However even their study showed that it was exceptionally rare and it was a pilot study with all of the inherent accuracy issues which such small studies suffer.
The research is very clear, It is not an inherritted condition.”
hi Lottie I have been diagnosed with CBD, but I was told by my current consultant that it wasn’t hereditary. I too have lost the use of my right arm, but I had breast cancer in 2021 and the consultant thinks this condition was triggered by the chemotherapy or radiotherapy after the breast cancer. If I can help at all I will
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