18 Things People Affected by Neuromuscular Diseases Wish Doctors Understood

Neuromuscular diseases and disorders affect the nerves that control voluntary muscles, and over the course of time, the disconnect between the nervous system and the body causes muscles to weaken. An estimated 1 million people in the U.S. have some form of neuromuscular disease, and about 40 percent of them are under age 18, according to the Muscular Dystrophy Association.

Muscular dystrophy and ALS are among the most common neuromuscular diseases, but even with the amount of research and awareness campaigns, most of these diseases still don’t have cures. On top of that, many patients with neuromuscular diseases, along with their family members, have expressed their frustration with the lack of knowledge among doctors.

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So The Mighty teamed up with the Muscular Dystrophy Association to ask their Facebook community what they wish medical professionals understood about neuromuscular diseases.

Here’s what they had to say:

1. “We are not a textbook case. Each one of use is different.” —Debbie Furgason

2. “Just because we look healthy on the outside doesn’t mean we’re feeling good in the inside.” —Jessica Jamison

3. “For me being a sibling, I would like doctors to remember that the whole family is dealing with muscular dystrophy.” —Allison Beaumont

4. “We have pain and are not after drugs for the hell of it.” —Becky Pierce Jones

5. “Listen to patients.” —Valerie Weaver

6. “Don’t blow a patient’s complaints off.” —Joanne Mims

7. “Don’t act like I’m wasting your time. Have more info on the type of MD I have instead of looking in the medical book.” —Julie Anderson

8. “I am the one who cares for my child 24/7. Therefore I do know what I am talking about, and I do know what my child needs.” —Trish Ehrenfried

9. “Don’t assume you know how his physical disability affects him socially or emotionally, but don’t discount that it does have an impact.” —Tina Riley

10. “It is an economic disaster on the entire family.” —Debbie Thomas

11. “This is a medical profession, not a paycheck.” —William England

12. “When dealing with a new doctor, I need them to understand that yes, I can talk medical terminology.” —Brandi Vozsnyak

13. “Give patients more information because sometimes we don’t understand what is happening to us.” —Christopher Parsons

14. “When my doctor finally gave me the ALS diagnosis, he would not look up from his shoes. Doctors need to learn how to give a diagnosis as part of their training.” —Pierre Lescure

15. “Parents and patients today need open dialogue throughout all of the diagnostic appointments.” —Maggie French

16. “Doctors, please continue to follow your instincts and advocate to help families find answers.” —Becky Rovenstine

17. “We didn’t ask for MD, but we have it and we have to live with. Help us manage it, listen to our concerns, especially when there are no clinics within a 10-hour drive. You are our resources.” —Marjorie Martinez-Langdon

18. “Understand that anyone at any age can have MD.” —Greg Brown

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 and clarity

All images via Canva