I don’t have many friends either. Everybody I know I have met through work, school or university. It’s very difficult to make friends. If I go to a bar, unless I make an effort to go and speak to someone, most of the time I will be ignored. There are some people that stare but not many.

I sometimes wonder how I am perceived in their eyes? Do… Read more

Yes please do because my brace is over 15 years old and starting to get weaker and not as supportive. It’s starting to make me depressed as I feel like there’s little hope.

Hi,

I have severe scoliosis of the spine and my curvature is very bad and I have to wear a spinal brace and without it I cannot sit up, swallow properly or breathe easily. The doctors have said that because I am 44 years old, a spinal fusion is not possible and would be quite dangerous for me. So it means I have to wear a spinal brace for… Read more

Thank you for the reply. My humidifier only has 3 settings and I have set it to the lowest. When you say that the mist goes up your nose if the humidifier is set to high, what happens? Lately, I’ve been finding that I keep having moisture in my nose and it feels like I have a cold but I don’t. Could the humidifier be causing that?

 

One of the biggest problems I have using a BiPAP is finding a comfortable mask. I have tried so many masks such as nasal masks but they hurt the bridge of my nose and other masks seem to leak during the night. At the moment I have been using a P10 mask but that as started to cause some soreness around my septum on my nose.

The other issue I… Read more

I had to temporarily stop taking Risdiplam because of my stomach issues. I still have residing side effects from it and after 2 weeks my stomach is still not right. I also tried taking Imodium but that didn’t help. What I would be interested to know is if so many people are having stomach problems with this medication then why is that? Is… Read more

Hi,

I have SMA type II and I am 43 years old. I currently use a BiPAP at night and it has taken me nearly 4 years to get used to it. I still have some difficulties using it occasionally and would like to speak to someone who is currently using it to share some experiences. Is there anyone here that uses a BiPAP?

I also dislike certain parts of my body. I tend to not look in the mirror so often below my neck but one day I had someone take a picture of my naked body and I was shocked to see what I saw. I had never seen myself completely naked and I didn’t like what I saw but at the same time it was something new to me and I knew I can’t change it so… Read more

Thank you for all of the replies. I hope the symptoms improve as well and I think I will need to change my diet slightly. I eat a lot of fibre normally to help with going to the toilet but I will need to reduce that considerably whilst taking this medication.

I started taking some protein shakes recently a few months back but only a little bit… Read more

Hi, I just joined this forum today so hello and I hope you can help with a problem I’ve been having since I started Evrysdi. I have SMA type 2 and I am 43 years old with a severe scoliosis and no spinal fusion.

I started Evrysdi or Risdiplam as it is called over here in the UK around three weeks ago and everything was going fine until… Read more