How the disability community benefits from having more choices
From transportation to treatment, the more options we have, the better
When in the course of human events, it becomes necessary to make choices, we must first consider our options.
Congratulations! By reading these words, you have made a choice to crawl into my brain (terrifying) for a few moments and learn about what is currently on my mind.
If you have read my column before, you likely know that I live with limb-girdle muscular dystrophy (LGMD) type 2e/r4. This diagnosis has brought many experiences that have shaped me into the man I am today. I would like to explore with you how this chronic, rare disease both limits and expands the choices I have in front of me.
As my disease has progressed, I’ve lost functional use of my legs and trunk muscles and have gone from walking to using a manual wheelchair to now relying on a power chair. As a result, many mobility-related choices are made for me. For example, I can’t enter anyone’s home if they have stairs, and most do. People must either come to my home or meet me in a public, accessible place.
I can no longer drive a regular vehicle — another choice my disease has made for me. But again, I still have options. I now drive a modified minivan with a ramp, and the driver’s seat has been removed so I can lock my power wheelchair in its place. A computer allows me to push buttons to start the car and operate an automatic transmission, while two joysticks enable me to apply gas, brake, and steer.
This technology exists thanks to the advocacy of disabled adults. During the 20th century, as many wounded veterans returned from war, the desire for greater independence and mobility led to an increase in adapted vehicles. With the addition of portable lifts and ramps, disabled individuals had more options than ever for getting around.
The passage of several federal laws protecting disability rights also granted our community more choices. For example, Section 504 stipulates that public schools must serve disabled students in their jurisdiction, offering children and their families more options for education. Plus, school buses were some of the first vehicles to be modified with wheelchair lifts.
Care and treatment options
While technology and legislation have expanded our options for daily living, people with rare diseases also have choices when it comes to treating and managing our conditions.
Unfortunately, no disease-modifying therapies are available for LGMD. Currently, we can only manage the condition with supportive tools such as physical therapy, mobility aids, and breathing assistance. Medication can help us manage certain symptoms or complications, such as heart problems.
Those of us with LGMD would benefit from having more treatment options. If advances in adaptive technology happened thanks to patient advocacy, why should it be any different with medicine?
Researchers are exploring several possible approaches to treating LGMD, including gene therapy and gene-editing technology. It is an exciting time in medicine, and I feel hopeful enough about the future of these therapies that I believe it’s my duty to actively educate those who work for regulatory agencies. I want them to know that patients and their families should have a say in the development of these treatments, as long as everyone understands the risks and rewards involved.
All of us living with rare, chronic conditions should be following along with regulatory decisions about therapies. Our voices are powerful, and we can use them to advocate for more research and treatment options. The more choices we have, the better off we’ll be.
Choose to advocate for a brighter future for all of us.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.