RISDIPLAM DAY 57

On Day 57 of my Risdiplam Journey I am reporting no significant changes but more small baby step changes. I talk about my forthcoming care and exercise plans and I am joined by my longest serving carer Christy.
Risdiplam (Evrysdi) is an approved treatment for (SMA) in adults and children 2 months of age and older.
Risdiplam (Evrysdi) is a survival motor neuron-2 (SMN2) mRNA splicing modifier. A liquid medicine, it is administered daily by mouth or feeding tube and is the first and only medicine for SMA that can be taken at home. It works to increase and sustain functional survival motor neuron (SMN) protein levels in the central nervous system and peripheral tissues. SMN protein is found throughout the body and is critical for maintaining healthy motor neurons, responsible for transmitting movement signals from the brain to the muscles. People affected by SMA are dependent on the SMN2 gene to produce SMN protein, as they carry a mutation in chromosome 5q resulting in the SMN1 gene producing insufficient levels of functional SMN protein. Evidence shows that increasing the levels of SMN protein has significant clinical benefits for people living with a wide range of SMA types.
You can find more about SMA here
NHS
www.nhs.uk/conditions/spinal-...
UK Charity
smauk.org.uk
Treatment Charity UK
www.treatsma.uk
Cure SMA (USA)
www.curesma.org
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[@PandoraLeann]

My better half has started his journey today and so it's a tense, exciting and also worrying time for us. But this gives hope. Thanks for sharing. Also great news on strength etc.

[@thesmartchap]

Thanks. I’m glad these are of use. You’ll be completely fine. There are no horror stories that I’m aware of. Good luck.

[@yanetcortez3789]

Hi new to your channel, nice to have ran into you, I suffer with FSHD muscular dystrophy, I had not heard of this and I’m progressing rapidly 🥲thank you for sharing, if been extra weak no appetite no sleep I’m very nervous lots of anxiety, just soooo tired n week, think I’ll definitely talk to my doctor about this medicine.

[@leahsf7708]

Enjoyed this,

[@yanetcortez3789]

Very happy to hear your seeing/ feeling improvement. I got the child onset, I’m 46 now n already need 24/7 care, I’m also weak in my neck and arms aswell. Do you seem to have any anxiety? Good to see your still so active 👏🏼🙏🏼 I want that energy. I’m drained, barely eat , my children feed me but sometimes it’s so hard to swallow. Just get nauseous. Iv had many other test done and everything is normal so I don’t understand if what I’m experiencing is the muscular dystrophy just hitting me hard now or what?🤷🏻‍♀️ any advice?

[@thesmartchap]

Sorry just saw this

[@sammildon9166]

Good to see you mate. Great update! Can we have another one? I hope you're keeping well

[@dt.digital8887]

You had any update on this? How has it improved?

[@thesmartchap]

I will do one soon

[@tomevans2601]

You’ll be bench pressing her soon mate 💪

[@thesmartchap]

Or you 🤪