Hi, my name is Duane2012!

Duane2012

Hello, I need information on Treatment for SMA. If anyone can assist and guide me that would be great...

Ross_Alumni

Hi @Duane2012 and welcome to the community, how are you? 

Are you refering to spinal muscular atrophy? If so, you can find some information about it here from the NHS.

Just to clarify, we are not medical experts and therefore cannot give medical advice, have you discussed this with your GP?

chiarieds

Hi @Duane2012 - & welcome to the community. As mentioned above, any concerns should be discussed with your GP/ specialist. If you haven't come across them, this charity might be of some help: https://smauk.org.uk/

Lisatho11987777

Hi welcome and enjoy 

Duane2012

Hi guys, thanks for the  warm welcome. Okay, lets start from the beginning. I have Spinal Muscular Atrophy. I was wondering about the treatments for SMA; such as Zolgensma, Risdiplam or Spinraza. I was wondering about the process of either applying or obtaining these treatments. That is basically what I was needing, I am aware that I have to go to the GP for recommendation or to apply. However, I am wondering if anyone could share any experiences with the process. Thanks again friends...

Duane2012

Hi guys, thanks for the  warm welcome. Okay, lets start from the beginning. I have Spinal Muscular Atrophy. I was wondering about the treatments for SMA; such as Zolgensma, Risdiplam or Spinraza. I was wondering about the process of either applying or obtaining these treatments. That is basically what I was needing, I am aware that I have to go to the GP for recommendation or to apply. However, I am wondering if anyone could share any experiences with the process. Thanks again friends...

janer1967

Hi and welcome sorry I dont have anything to share just wanted to say hi and welcome 

Hopefully other members may be able to help 

chiarieds

Hi @Duane2012 - there's some info on the SMA website I mentioned.

Please see: https://smauk.org.uk/treatments-research

And more here: https://www.treatsma.uk/      look under 'Treatments'

I'm sorry I couldn't find out more, but it seems, as you mention, that you would need to discuss this with your GP, & if he recommends this, enrol you in the Early Access to Medicines Scheme, as far as Risdiplam goes.

Please see: https://www.gov.uk/government/publications/risdiplam-in-the-treatment-of-type-1-and-type-2-spinal-muscular-atrophy-sma-in-patients-2-months-of-age-and-older

Zolgensma is being evaluated by NICE, with a report due in March next year (so not available as yet):  https://www.nice.org.uk/guidance/indevelopment/gid-hst10026

About Spinraza: https://www.nice.org.uk/guidance/ta588/informationforpublic

Lisatho11987777

I am getting to learn alot about different medical conditions  i have lupus  and I can see now why lupus is hard to diagnose  because I could pick one or two symptoms of each condition I have seen on here  that I have but is caused by lupus 

There are si many conditions that have similar symptoms hat's off to the medical profession they do an amazing job 

Its took from when I was 18 to 26 to find out I had lupus  it wasn't well known back then  but I was lucky to get referred to professor Hughes  at St Thomas hospital London  I stayed there for ten days had lots of tests  abd thsts how I found out 

I was glad becsuse at long last I knew  I am used to it know so have learnt to cope with it I have to inject fragmin every day which is a blood thinner  and I try to keep myself going which is why I am trying to get back to work 

I see that many people are suffering with their conditions and its upsetting to see this there is help out there  it is sometimes  hard to find 

I am lucky that I have a wonderful  local councilor who  found people that could help me  she does alit for the community in my village  she goes above and beyond she deserves an award 

Cher_Alumni

Just to say hello @Duane2012 and welcome to our community

I hope the information passed on by our members helps, but be sure to let us know if you have any other questions.

Best wishes and have a happy Christmas-time.