Tuesday, January 9, 2018

The Upside of Social Media


If you've read here before (or if you know me in person) you know that I have Spinal Muscular Atrophy (SMA) and I'm in a wheelchair. SMA is an incredibly rare disease, and for most of my life, I only knew two other people who had SMA, and one of them is my sister! And because SMA is so rare, and because there are still a lot of things that doctors don't know about it, my family and I became the de facto experts about living with the disease. That's not to say that doctors didn't help us at all, but a lot of times, it's the day-to-day experiences about living with SMA that you're not sure how to deal with - going away to college, getting a job, getting attendant care.

But a few years ago we found a few SMA groups on Facebook. It's been really fascinating to join in and read the posts of other families who are also living with SMA. It's comforting to see people posting who are older than me - people who have been able to successfully navigate living with SMA as an adult. It's also exciting, in a way, to see other people posting about things that we wondered about too - it's that little zing of knowing that there are people out there who have had the same experiences! And it's amazing to know that there is a place I can turn to with questions, where I'll get lots and lots of answers. The group has also helped me learn a lot about a new treatment for SMA, but that's a lot to explain and another post all on its own.

Having the ability to chat with people who are experiencing the same things that I am, and who can answer questions for me when I don't know where else I could find the answers, is so vital! Social media is great for staying in touch with family and friends, but I love that it's also connected me to another community of people who would never have met, otherwise.


11 comments:

  1. Much thanks to you for setting aside the opportunity to distribute this data exceptionally helpful!
    buying instagram followers

    ReplyDelete
  2. 먹튀사이트 완전분석-먹튀해부학-먹튀검증 의 새로운 패러다임을 제시합니다 먹튀사이트 검증 피해공유사이트
    먹튀사이트

    ReplyDelete
  3. The importance of utilizing social media to help any business grow cannot be understated.

    ReplyDelete
  4. This was a really great contest and hopefully I can attend the next one. It was alot of fun and I really enjoyed myself.. Musically App

    ReplyDelete
  5. I like your website plain and simple. Keep up the great work and I will keep coming back. Buy Facebook Views

    ReplyDelete
  6. So you want to increase your facebook live viewers Buy Facebook Live Viewers , you say. You can buy your facebook live viewers from us and your feed will be popular! Get more attention to your live feeds!

    ReplyDelete
  7. But these blogs could be tarnished with bad links that could be linked to spam. This will only end up harming the interest of the back-linking process. Shane Perry Marketing

    ReplyDelete
  8. Considerably, the article is really the freshest on this worthy topic. I agree with your conclusions and can thirstily look forward to your forthcoming updates. Saying thanks definitely will not just be sufficient, for the huge lucidity in your writing. I will certainly directly grab your rss feed to stay privy of any updates. Pleasant work and much success in your business endeavors! get likes on instagram

    ReplyDelete
  9. The importance of utilizing social media to help any business grow cannot be understated. But, there can be serious legal consequences for businesses when their employees or affiliates and marketers use any of the popular social media forums. MyLife

    ReplyDelete
  10. If you are looking for more information about flat rate locksmith Las Vegas check that right away. famoid.com

    ReplyDelete
  11. that social media stages are a joke, their valuations depend on nonexistent clients, and their uprightness lies somewhere close to Lucifer and that person who eats individuals' appearances in the films. Comprar visitas youtube

    ReplyDelete