Q&A

Original Q&A contributer: Sean Clogston

What is DMD?

DMD stands for Duchenne muscular dystrophy, a disorder that causes muscle deterioration, due to a missing or malfunctioning Dystrophin gene.

What is a DMD Pioneer?

Someone who has DMD and lived longer than many medical professionals and family members expected. The first generation of people with DMD to utilize mechanical ventilation, personal computers, and other medical technologies, to enhance and lengthen their lives.

How did you live this long?

Most of us use some sort of breathing assistance and have reasonably healthy hearts. As we age breathing becomes more difficult and requires us to use respiratory assistance either through a tracheostomy or a mask. (See the Respiratory Page for additional information.)

Also, with age our hearts can begin to weaken, but with new medications it is possible to control heart problems. (See the Cardiac Page for additional information.)

Can you work?

Yes, but we’re limited in our career choices because of our physical limitations. Computers and Assistive Technology have allowed us to become writers, web designers, graphic artists, salesmen, business owners, and much more.

Can girls have DMD?

Yes, but it is very rare. Girls must have two defective or missing Dystrophin genes, while boys only require one.

Are any of you married?

Some are, but meeting the right person can be difficult.

Can you have children?

Yes, having DMD does not affect our ability to have children.

Would your children have DMD?

It really depends. Assuming we have a child with a woman who doesn’t carry the bad Dystrophin gene, boys would almost always be free of DMD, but girls would be carriers.

Will there be a cure soon?

While major progress has been made with treating the disease, a cure has not been found and is not likely anytime soon. However, we do know which gene causes the disease and what protein it is that the gene is telling our cells to stop making. So, a cure is possible sometime in the future.

Do you watch the Jerry Lewis MDA Labor Day Telethon?

The guy writing this FAQ does, but opinions vary. Some pioneers find it degrading or sappy.

Do you get frustrated with what your body can’t do?

Sometimes, but we try to concentrate on what we can do and not worry too much about what we can’t do.

Can you leave your homes?

Yes, we can leave our homes. Through the use of power wheelchairs and more portable medical equipment, like ventilators, it is much easier for us to go out. Some of us have difficulty getting out, due to lack of transportation or personal care services, but many of us who have such assistance can get out frequently.

What is a ventilator?

A ventilator, sometimes called a respirator, is a mechanical device that assists people with breathing. They are especially important to people with DMD, because breathing becomes more difficult with age as chest muscles deteriorate.

Do you live with your parents?

Most of us do. Some parents have it really tough, because respite is not always easy to find or afford.

Are you in pain?

DMD itself does not cause pain, however some of us do have pain on occasion. Oftentimes this is due to muscle aches and pressure sores caused by being unable to move around. Pain is usually treatable with over-the-counter medications, but can occasionally require prescription medications. Advances in seating technologies in wheelchairs and mattress technologies have made it much easier to avoid pain caused by immobility.

Is Multiple Sclerosis (MS) the same as or similar to Muscular Dystrophy (MD)?

No, they are not the same, nor are they related. Both cause severe disabilities but are not related. Visit the National Multiple Sclerosis Society web site for information on MS.

Is DMD contagious?

No, it is a genetic disorder.