Spinal muscular dystrophy type 3
Hi everyone, I'm 31 years old, and I was only diagnosed with Spinal muscular dystrophy type 3 through genetic testing about three years ago, even though my first symptoms started when I was 12. Back then, I noticed that it was becoming difficult to get up from the floor and I couldn't climb high stairs or step up onto things without difficulty. Over the last 15+ years, my condition has progressed slowly. At the moment, if I fall, I can't get up by myself—I need someone to help lift me. I still can't climb high stairs without holding onto a railing, and I can't run or do many physical activities. My walking is still relatively good, and many people don't even realize I have a disability just by looking at me. But falling is one of my biggest fears because if no one is around, I simply can't get back up. To be honest, this is emotionally very difficult for me. I think about my condition every day, and I'm scared of what the future might bring. I come from a less developed country, and my doctors have told me that there is currently no approved treatment available for my type of muscular dystrophy. That's why I'd really like to hear from people living in countries with more advanced healthcare. If you have type 3 muscular dystrophy, what has your experience been like? Are you receiving any treatment, medication, physical therapy, or participating in any clinical trials? How are you doing emotionally, and has anything helped you maintain your mobility or quality of life? Unfortunately, I can't get much information where I live, so hearing your experiences would mean a lot to me. Thank you for taking the time to read this, and I apologize for the long post. Any advice, experience, or information would be greatly appreciated.