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I am Gustiandari Fidhya Permanik

a family member in a familial ALS family,
a family member of someone living with ALS


I really want the best treatment that may improve his ability and slow the progression of the disease.

Firstly my dad complained of weakness and pain of the right arm since 10 months ago, at the beginning the doctors suspected carpal tunnel syndrome, and he was treated with steroid orally. Until then he felt no improvement, and he had already treated with physiotherapy, steroid and pain killer. Finally, he was diagnosed with motor neuron disease. The doctor said that maybe his survival life time only in 1 year.

Sadly, I am his daughter. Right now, i am still an ophthalmology resident in Indonesia. I really want the best treatment that may improve his ability and slow the progression of the disease. I thought maybe by joining this community, my dad can be involved to have the opportunity to get the best medicine to improve his disease.

I really want my dad to watch my graduation to become an ophthalmologist, because although he was sick, he still find way to finance my study, he really want me to get the best, and so do I.


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