My cousin got fus als :( PLZ some advices

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zzh345345

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Hello everyone, my cousin is just 23 years old and he got fus-als without family history..... What should he eat? Like what friut or medicine may help him? I know that this type of ALS is very rare. Many thanks guys. Any information could help us!
 

Nikki J

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I am sorry about your cousin. FUS is a nasty mutation, fortunately rare, but devastating. Some variants are recessive meaning a person has to inherit the trait from both parents to get sick but the young onset forms are often so called de novo meaning the mutation occurs during conception so is not inherited.

there isn’t anything specific he can eat but he should do whatever is necessary to avoid losing weight.

Is your cousin also in the UK? There is a trial for genetic therapy for FUS enrolling but I don’t think it is the UK. His neurologist would know. I trust he is being seen at a major MND center
 

zzh345345

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Thank you Nikki, I am Chinese, we living in Glasgow right now. May I ask that does Rilutek, Edaravone or Curcumin help this disease? I think these can help the most common patients with ALS but maybe not fus.....I also heard about ionis, a new drug against fus :(
 

Nikki J

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Ionis is the trial I was referring to. Were you told if there is a site in the UK? It is a small trial (64 participants) but it is a rare mutation. The main site is in NYC. It says there are others but not where. It may be just a couple. I think the earlier trial was just 2 or 3 places in the northeast US though not sure

I think all the other things will likely be as effective for fus as for any other forms. Sadly, FUS tends to be very aggressive so slowing down a fast form of ALS doesn’t make as much difference as it would for a slower type. None of those things stop or improve any kind of ALS unfortunately
 

zzh345345

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It is now the second month and he has not lost weight. Except that his arms and thighs have been weak, and there is postural tremor in his hands, and it is difficult for him to gasp when he is lying down.....
 
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