pavluha_bc
New member
- Joined
- Mar 12, 2025
- Messages
- 1
- Reason
- PALS
- Diagnosis
- 03/2020
- Country
- UA
1. Seeking Help with SOD1 ALS Treatment
Hello.
I am reaching out to ask for guidance about accessing treatment for ALS patients with the SOD1 gene mutation—specifically Qalsody (Tofersen). I am based in Ukraine and would like to know how to access this treatment in the EU.
• Are there any specific clinics or centres in the EU that specialize in ALS and offer Qalsody?
• Any advice on how to begin this process or organizations that might assist me would be invaluable.
Please share if you’ve gone through something similar or have any information.
2. My Story
I was diagnosed with ALS five years ago, and here’s how it all began:
In the winter of 2020, shortly after my 24th birthday, I noticed small muscle twitches and weakness in my left hand. At the time, the world was dealing with COVID lockdowns, and I decided to quit my job and learn web development.
For the first six months, the disease progressed very slowly. I didn’t think much of it until I noticed that the muscle in my left thumb was smaller than in my right. That’s when I visited the doctor and heard about ALS for the first time.
For the next two years, the progression was slow. I was still able to do pull-ups, push-ups, and even exercises with an ab roller. But everything changed on February 24, 2022, when Russia invaded Ukraine. I woke up to the sound of explosions, and since then, my condition has worsened significantly.
Now, at 29, after living with ALS for five years:
• I have lost a lot of weight.
• I can still work as a web developer.
• I can walk around my house a little, and although my arms are weak, I can still eat by myself.
• I can still speak, but my voice has changed, and my tongue sometimes gets stuck.
I am sharing this in the hope of connecting with people who understand or can guide me. Thank you for taking the time to read this. Any help or advice is appreciated.
Hello.
I am reaching out to ask for guidance about accessing treatment for ALS patients with the SOD1 gene mutation—specifically Qalsody (Tofersen). I am based in Ukraine and would like to know how to access this treatment in the EU.
• Are there any specific clinics or centres in the EU that specialize in ALS and offer Qalsody?
• Any advice on how to begin this process or organizations that might assist me would be invaluable.
Please share if you’ve gone through something similar or have any information.
2. My Story
I was diagnosed with ALS five years ago, and here’s how it all began:
In the winter of 2020, shortly after my 24th birthday, I noticed small muscle twitches and weakness in my left hand. At the time, the world was dealing with COVID lockdowns, and I decided to quit my job and learn web development.
For the first six months, the disease progressed very slowly. I didn’t think much of it until I noticed that the muscle in my left thumb was smaller than in my right. That’s when I visited the doctor and heard about ALS for the first time.
For the next two years, the progression was slow. I was still able to do pull-ups, push-ups, and even exercises with an ab roller. But everything changed on February 24, 2022, when Russia invaded Ukraine. I woke up to the sound of explosions, and since then, my condition has worsened significantly.
Now, at 29, after living with ALS for five years:
• I have lost a lot of weight.
• I can still work as a web developer.
• I can walk around my house a little, and although my arms are weak, I can still eat by myself.
• I can still speak, but my voice has changed, and my tongue sometimes gets stuck.
I am sharing this in the hope of connecting with people who understand or can guide me. Thank you for taking the time to read this. Any help or advice is appreciated.
