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HealthIAmA 20 year old living with a neuromuscular disease known as Spinal Muscular Atrophy.

May 30th 2017 by able2sv • 8 Questions • 64 Points

Hey guys! My name is Steven and I'm a 20 year old with SMA type 2. SMA is a genetic neuromuscular disease that essentially prevents the development of muscle, and because of that, I have very minimal upper body strength and use a powerchair for mobility. SMA affects thousands of individuals in different ways, and can range from extremely severe cases to late-onset more mild ones. As a "type 2", I fall in the middle of that spectrum.

I just finished my junior year as a graphic design student at St. John's University, and in 5 days will be moving to Manhattan for a summer internship. Because I need a lot of assistance for various daily activities, I have nursing care both when home and when I'm living at college to help me achieve the most independent lifestyle possible.

As a graphic design student, I really enjoy the arts and creative projects, and am a huge fan of comedy. I also work for my university's newspaper, and am a huge New York Mets fan.

Without further ado, ask me anything! 😃

taking selfies with short arms is hard but here ya go!

Q:

Congrats on your upcoming internship! I'm thrilled for you. This is such an exciting time/age in a person's life :) Are there any specific anxieties or things you're excited about as you relocate to such a chaotic urban setting?

A:

Definitely! I'm very excited to be so close to so much action, and the place I'm going to be interning is a pretty iconic building, so that's really exciting as well.

As far as anxieties, transportation will be interesting as I can't drive, and the accessibility of the public transportation system is notably unreliable. Luckily I'm within walking (wheeling?) distance to my job so I won't need to rely on it. It'll also be my first time working in a professional office environment so that first day of work I'll probably be anxious.


Q:

Sorry, I couldn't resist

A:

Yeah. I always wanted to be The Real Slim Shady too but doesn't seem like that'll work out either.


Q:

Hey Steven, not sure if this is live but I'll ask anyway. What's the general prognosis/life expectancy for SMA? How has that changed in the last 30 years? Can you see the expectancy increasing a lot in the future?

A:

SMA varies a lot in severity from one person to another, but currently a lot of type 2's are living well into their 40s & 50s, with no sign of significant fatal issues. Thirty years ago it was rare that any person with SMA live past 20, and most died before the age of 2.

I definitely think the life expectancy will increase, especially now that there are treatments available for newborns and infants that seem to work very well. Technology also has a large role in this, more so in quality of life, but it is also something that continues to get better very quickly.


Q:

Hey Steven! I just want to ask if you are enjoying life? My mothers sister died from SMA at the age of three and I would love to see if today's patients can have happy lives!

A:

Definitely! While there are unfortunately still many children with SMA who pass away at young ages, people with SMA are living longer, healthier lives than ever before. I absolutely enjoy life, have fantastic family and friends, and have been fortunate enough to experience tons of amazing days. It's common now for people with SMA to live long lives, have children, hold a diverse variety of jobs, and enjoy just about everything there is that life has to offer.


Q:

Would you date someone with a disability? Can be SMA or something else.

A:

I would, although I think logistically dating someone else with SMA or a similar disability would be pretty difficult. I'd never rule anything out completely, but I think it's important in a relationship to be able to have some independence as a couple, and that is far easier with some disabilities than others.


Q:

Hi! Favorite color?

A:

Yellow! Always has been


Q:

What hobbies do you have?

A:

I play chess, enjoy tv/movies/music like pretty much everyone, also some video games (mainly Madden or the popular Mario games with friends). Hooked on PoGo lately. And then drawing/design I'd count as a hobby even though it's tied to my school/career.

I'm someone that always feels like they need to be busy/productive so I tend to keep myself pretty occupied during any breaks or vacations.


Q:

Hi I hope you are doing well! When in public do people tend to stare? How do you deal with these reactions? Also do you write outside of your university's newspaper?

A:

I mostly get stares from young kids, and usually I'll just smile or sometimes say "hi". As a general LPT, I find that kids really like when you compliment their clothes or toys so I'll do that too. Just whatever I think will make them comfortable with the situation. It may seem like a small incident, but those interactions have a lot of influence on their perception of people with disabilities as they grow up.

I've written one article recently for a disability related newsletter, but it's not something I do often. I enjoy writing, and I've heavily considered starting a blog, but I'm pretty much waiting until a time in my life when I'll have more time and resources to put into it.