There are many different forms of muscular dystrophy (MD), an umbrella term for a group of genetic diseases characterized by progressive weakness and degeneration of muscles in the body. Duchenne muscular dystrophy is the most common form of the disease, and it primarily affects boys. Becker muscular dystophy is also common but far less severe than Duchenne. Some forms of MD appear in infancy or childhood, while others may not show up until middle age or later, according to the National Institute of Neurological Disorders and Stroke.

While treatments have helped increase life expectancy for those with MD, no cure currently exists. Due to its various forms, there’s a lot of confusion around what MD is — and what life with it entails.

So The Mighty teamed up with the Muscular Dystrophy Association to ask their Facebook community what they wished others knew about the disease. Here’s what they had to say:

1. “It is not MS!” —Melanie Carson

2. “It’s not just my legs that are affected; it’s my entire body.” —Leah Marie Spencer

3. “Muscular dystrophy has no effect on intelligence. Having a physical disability does not mean I am mentally lacking, and I should never be treated as such.” —Kelli Bosarge

Muscular dystrophy has no effect on intelligence Kelli Bosarge

4. “I can fight with it, but I can’t beat it.” —Bhupender Sharma

5. “Muscular dystrophy is not contagious.” —Tammy Gregory

Muscular dystrophy is not contagious Tammy Gregory

6. “It not only affects the person with it; it affects the family.” —Robert Avalle

7. “Don’t stare! Ask questions if you are curious.” —Kate Dharma

Don’t stare! Ask questions if you are curious Kate Dharma

8. “It presents differently in every patient.” —Jamie Russell Peterson

9. “Working out isn’t going to make us build muscles and get strong again.” —Ria Spencer

Working out isn't going to make us build muscles and get strong again Ria Spencer

10. “I’m in a chair, but I can understand and hear you.” —Melanie Spall

11. “There’s no cure.” —Jacque Robertson

12. “It can creep into any family.” —Briana Stiner

It can creep into any family Briana Stiner

13. “Everything is harder.” —Krystal Torri

14. “It took my son’s life.” —Susan Barlow

It took my son's life Susan Barlow

15. “Because it isn’t a ‘popular’ disease, some forms especially, there isn’t nearly enough funding for research.” —Autumn Sullivan

16. “I’m not lazy. It’s a progressive disease. What I may have done last year with relative ease I may struggle with now.” —Aaron Robert Drawbridge

What I may have done last year with relative ease I may struggle with now Aaron Robert Drawbridge

17. “I’m not concerned about what the community knows. It’s the medical community that’s clueless. We need a network of doctors dedicated to MD!” —Sonya Magoon

18. “Don’t roll your eyes when it takes me longer to pay, get my ID out at the airport or use the ATM. Don’t assume I am drunk when I fall down… I am doing my best to be independent and to maintain the strength I have, but it take me longer to do things.” —Christine Pidgeon Anderson

Don't assume I am drunk when I fall down Christine Pidgeon Anderson

19. “Not only is it physically disabling, but the emotional toll it’s taken on me is just as bad. I can no longer do the things I once did for myself and it’s very frustrating and depressing.” —Tracy Barhite

20. “Not everyone with muscular dystrophy [uses] a wheelchair. Some of us look completely healthy until we get to a staircase, have to pick up something beyond our energy level or walk a long distance.” —Tammy Lefkowitz

21. “It’s not the end of the world for some of us.” —Kristin Dutt

It's not the end of the world for some of us Kristin Dutt

In addition to the many forms of muscular dystrophy, the Muscular Dystrophy Association is dedicated to finding treatments and cures for more than 40 neuromuscular diseases that cause progressive muscle weakness, including amyotrophic lateral sclerosis (ALS), Charcot-Marie-Tooth disease (CMT) and spinal muscular atrophy (SMA).

For more information, be sure to visit the Muscular Dystrophy Association’s website and Facebook page.

*Some responses have been edited and shortened for brevity


Sue Nuenke has been giving away stickers featuring kids with disabilities since 2007.

For eight years she’s been making stickers and coloring books showing physically diverse children. It’s the continuation of a project she started with her son, Christopher Harmon, when he was still alive.

Sue Nuenke and Chris Harmon in 2009. Chris was 23.

Harmon was born in December 1985, and Nuenke and her husband adopted him when he was 4 days old. Three years later, he was diagnosed with Duchenne muscular dystrophy, an inherited disorder that causes rapid muscle weakness and loss of muscle tissue.

Nuenke and her son when he was 6 years old.

One day, when Harmon was 20 years old, he and his mother were in a craft store looking for stickers to decorate a photo album. Nuenke made a comment about how no stickers featured people in wheelchairs. A nearby shopper heard and expressed a similar frustration. That day, Nuenke decided to make some of her own, using her son as her model and mentor.

“He was my most valuable critic and biggest cheerleader,” Nuenke, who lives just outside Cincinnati, Ohio, told The Mighty. “He was always coming up with new ideas for designs and encouraging me to keep going. He believed there were lots of kids who would like to see stickers that looked like them, too.”


With Harmon’s help and input, she drew different images of children in wheelchairs and using walkers and sent them to a printer. Then she cut them out and gave them away for free to people she met. Soon, Nuenke also began making and printing coloring books with her artwork.



Nuenke at one point made a business out of the sale of her creations, but after a while decided that she preferred to be able to just give things away instead of selling them. She went back to offering her work for free.

Over the years people would ask Nuenke for different things, such as stickers of kids with cerebral palsy or some with kids missing limbs. Nuenke would accommodate anyone who asked.

“I just think the whole idea of seeing somebody like you lets you know you’re not alone, that there are other kids out there like you,” Nuenke told The Mighty. “If somebody asks me, I make it for them. My goal was to give kids a fun little picture of somebody like them.”


It was a project that Nuenke and Harmon shared a passion for.

“He liked the stickers and books, he really did. He’d go, ‘Mom, they’re good, keep doing it,’” Nuenke told The Mighty. “He’s 50 percent if not more of this whole project. He was the motivation, he was the example, he was my whole life. He was very invested in it.”


Harmon died in 2011 from complications of his muscular dystrophy; he was 25 years old. Nuenke continued to draw for the both of them.

“He always wanted to be a cartoonist, but I became the cartoonist for us,” Nuenke told The Mighty. “So much of it was Christopher-inspired, or he gave me the ideas.”

Harmon loved to draw, but because of his condition, he was unable to feed himself, let alone draw on his own, since about the age of 13. Still, with the help of an aide, he took art classes all throughout school.

Then, in the last two months of his life, Nuenke and Harmon worked together on an e-book about Duchenne muscular dystrophy called “DMD and Me.” You can view the full e-book here.

Nuenke continues to give away her art for free, finding joy in the task and purpose in continuing the work her son inspired. Some pages from the book are below, and Nuenke encourages readers to take them, print them, color them and share them freely.

Check out some of her drawings below: 

New3 NEW2

New4 New5 New6 New7 New8
Some pages can also be downloaded at a website called Joni and Friends, or you can email Nuenke at [email protected] with your address to request a hard copy of one of her coloring books. She will ship books and stickers to anyone within the United States at no cost to the recipient, while supplies last.

“I feel that God gave me this thing,” Nuenke told The Mighty, “and it was meant to be given away.”

When Jake Wesely received what he describes as a discriminatory letter from his high school, he took to social media to right a wrong.

Wesely, 14, attends Bucks County Technical High School in Fairless Hills, Pennsylvania. He uses a wheelchair because he lives with Duchenne Muscular Dystrophy, a genetic disorder characterized by progressive muscle degeneration and weakness.

Recently, the school sent a letter to Jake’s family, and the families of about 60 other students, saying “medically exempt” students would not be allowed to participate in the school’s athletic Field Day.

The letter explained that medically exempt students would be required to wear red wristbands to separate them from the other children. If they were caught removing the bands or participating in the activities, they would face “disciplinary consequences.”

Feeling marginalized, Jake posted a photo of the letter to Twitter.

Disability activists and news organizations quickly connected with Jake online, and it didn’t take long before his school took notice.

School officials soon retracted the letter, which they’d been sending out for years, and issued a full apology, CBS News reported.

I’m happy he brought it to our attention,” Dr. Leon Poeske, the school administrative director, told the outlet. “We were wrong.”

“I am glad to see such a strong young man take action for the basic rights as [his] classmates,” Amanda Ranochak, a Bucks County Technical High School alumna, told The Mighty in an email. “I only hope this strength will carry [him] on for the rest of [his] time in high school and beyond. Many of us on the sidelines are cheering for [him].”

 Get more on the story in the video below:

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On September 8, 2013, I was admitted into the hospital and prepped for a C-section the next day. I was so excited to hold my little girl in my arms after a 41-week wait. On September 9, at 8:40 a.m., I heard my baby’s cry. She was wrapped in a towel and put next to me while I got stitched. I got to kiss her little forehead and examine her beautiful tiny features. Then she was taken away for what I was told was a brief doctor check up. But hours passed, and she wasn’t brought back to me. I was informed my baby was floppy, and so she was placed in the NICU.

My mind went blank. I had no idea what “floppy” meant. I couldn’t think of the questions to ask. My brain turned off. I was told there are many causes for floppiness. As the doctor went on, I tuned out. All I knew was that my heart was aching.

When she was 12 months old, she underwent a muscle biopsy, and we finally had a diagnosis: congenital muscular dystrophy.

IMG_230152374175684_resized If I knew then what I know now, maybe my heart wouldn’t have hurt so much the day I heared “floppy.” Maybe I wouldn’t have resorted to Google as soon as the doctor left. Maybe I wouldn’t have broken down because the Google results were so scary and overwhelming. If I could go back to that day, I would tell myself so many things.

First, that I should not worry about teaching my baby how to adapt to a different kind of life; she would be my teacher. My daughter has shown me how much I took for granted. She’s taught me how to take a step back and slow down and by doing that, I’ve learned how to enjoy the small things. I know people always say, “it’s all about the little things,” but I’m not sure everyone who uses that phrase fully understands it. It means to experience joy every single time an event occurs. Every single time my daughter sits in swing, I feel overjoyed. Every single time she places the rings around the cone, I feel like jumping up and down. It’s not just the first time she achieves something — it’s every time.

I would tell myself is that different is just different. Different is not bad. I was so worried about how my daughter would ever be able to fit in. Now, I actually feel ashamed of myself for ever wanting that. I was worried about her being mocked or bullied at school. Now I know that it’s up to me to raise a confident girl who knows how to stand up for herself. It’s not her muscular dystrophy that may be the source of her disability; it’s the way she’s brought up, the way she thinks, the way she speaks, the way she sees herself.

Over the past year, I’ve come to learn that when something is taken away, something is given instead. That would be the third thing I would have told myself. My daughter may have not reached the age appropriate physical milestones but mentally she could outrun any toddler! She started communicating just before 10 months, by 12 months she was able to recognize and complete familiar nursery rhymes and had a vocabulary of about 15 words. She is now speaking using two word sentences, expressing some emotions (mainly sleepy, mad and hungry) and even counting! I can’t deny the fact that my eyes well up whenever I see a toddler taking his or her first steps but I am a firm believer in miracles. Her improvements are phenomenal to me. As she grows and reaches milestones I discover just how strong, determined and persistent she is, and that on its own is sufficient to help her achieve whatever she wants.

My little warrior princess has shown me the true meaning of strength despite all her physical weakness.

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Luka, a 12-year-old boy with muscular dystrophy, only had one small wish: to see himself engage in some of the physical activities his condition makes him unable to perform. Thanks to the help of a particularly clever photographer, his wish has come true.

Luka can only move his fingers, which allow him to control his electric wheelchair and express his imagination through drawings. Matej Peljhan, a photographer and clinical psychologist from Vipava Valley, Slovenia, found a way to bring those drawings to life.

Photo: Matej Peljhan

In a photo series titled, “Le Petit Prince” (The Little Prince), Luka is placed on a set of ordinary scenes where he skateboards, plays basketball, walks up stairs and more. He’s positioned on the ground on top of various tarps and props that give the illusion he’s moving.

While Pelihan is responsible for bringing the boy’s dreams to life, he says it’s Luka who’s the real star.

“[Luka] is well aware of his fate but he doesn’t give in, either. He wants neither pity nor empathy but wants to stay positive and focused on the things in his life he can (still) do,” the photographer wrote in a press release. “He approaches all other activities he is… unable to perform in his own, witty way. Sometimes with the help of his imagination and virtual worlds where his creativity dashes to the sky and makes him forget his physical limitations and bonds.”

You can view the rest of the photos in “Le Petit Prince” below or at Pelihan’s blog here.
  Photo: Matej Peljhan

Photo: Matej Peljhan

Photo: Matej Peljhan

All photos courtesy of Matej Peljhan.

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Nordstrom is on a mission to have its ads reflect its shoppers. That means including people of different colors, races, ages and abilities. In its July catalog, the department store features models with and without disabilities wearing its 2014 fall fashion line.

This year, WDTN reports that four models with disabilities appear in Nordstrom ads: Jillian Mercado, who has muscular dystrophy; Alex Minsky, who lost his leg while serving in Afghanistan; Shaholly Ayers, who was born without her right arm below her elbow; and Heather Taguchi, a 7-year old girl with Down syndrome.

Meg O’Connell, a partner at consulting firm Global Disability Inclusion, told The Associated Press that Nordstrom “is a leader in this space and has been a long-standing supporter of disability inclusion not only in their advertising but also in employment and accessibility in their stores.”

Take a look at this year’s ads:



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