Monday, November 23, 2015

You may learn more about me from this list...

There are nine different types of muscular dystrophy (MD), a genetic disease 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. Please read the list below! You will get to know me better! Even the people and friends who already know me. With the exception of maybe 2 on the list, I know all of the others too well! 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 intel 4. “I can fight with it, but I can’t beat it.” —Bhupender Sharma 5. “Muscular dystrophy is not contagious.” —Tammy Gregory contagious 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 dontstare 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 workingout 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 creep 13. “Everything is harder.” —Krystal Torri 14. “It took my son’s life.” —Susan Barlow tookson 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 lastyear 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 drunk 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 end 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 Share on Facebook We face disabilities and diseases together. Join us on The Mighty. Sign up for our newsletter and join our social networks. SUBSCRIBE Email Address Read more: http://themighty.com/2015/11/21-truths-people-with-muscular-dystrophy-wish-others-understood/#ixzz3sM6thsfz

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