What Is Muscular Dystrophy? Facts and Statistics

Updated on July 21, 2020
Pamela99 profile image

After 22 years as an RN, I now write about medical issues and new medical advances. Diet, exercise, treatment, and lifestyle are important.

Muscular dystrophy can occur in both men and women, but it is most prevalent in men.
Muscular dystrophy can occur in both men and women, but it is most prevalent in men. | Source

Muscular Dystrophy Statistics

Muscular dystrophy (MD) disease in the U.S. affects 1 in 50 million girls and 1 in 5,600 to 7,000 males from ages 5 to 24. In the world, 1 in 3,500 males has MD. There are nine different types of MD:

  1. Myotonic: Most common MD in both men and women.
  2. Duchene: Most common in children from 2-6 years of age (life expectancy of 20 years).
  3. Becker: Symptoms tend to appear more slowly between 2-16 years old, but it can appear at age 20 (males may live to adulthood).
  4. Limb-girdle: Occurs in men and women from teenagers to adults. Walking is difficult or impossible by age 20, underlined by progressive weakness in the hips, then shoulders, arms.
  5. Facioscapulohumeral: Appears in the teens (men and women) and affects the face, shoulders and upper arm bone, but 50% of patients usually can still walk into adulthood.
  6. Congenital: Present at birth and progresses slowly for men and women.
  7. Oculopharyngeal. Affects mainly the eye and throat and is most prevalent in men and women ages 40-60.
  8. Emery-Dreifuss: Appears in the teens, primarily males. Life-threatening heart problems are common.

The disease is most prevalent in males. Symptoms may progress slowly, but some experience severe muscle weakness, with wasting and dying by the late teens.

Affected muscle tissue on the right with reduced dystrophin (green) production compared to healthy tissue on the left.
Affected muscle tissue on the right with reduced dystrophin (green) production compared to healthy tissue on the left. | Source

General Information About Muscular Dystrophy

MD is a group of genetic diseases. They cause progressive muscle weakness that will sometimes appear early in life, and at other times, it will progress more slowly. Various muscle groups can be affected, depending on the type of MD.

The most common MD form is Duchenne, which appears from ages 3-6 for boys and progresses quickly. While Becker MD has similar symptoms, it does not appear until the mid-teens or 20s and progresses more slowly.

Common symptoms include:

  • Waddling way of walking
  • Fast or slow progressive muscle weakness and wasting
  • Difficulty climbing stairs
  • Difficulty in rising from a lying or sitting position
  • Falling repeatedly
  • Muscle wasting of the thigh muscles
  • Spine curvature
  • Abnormal enlargement of the calves
  • Breathing trouble or trouble with swallowing
  • Limbs drawing inward and they may end up in a fixed position
  • Heart enlargement
  • Learning disabilities
  • Delayed growth

Complications

There are several possible complications, including:

  • Difficulty with walking - wheelchair use is common
  • Trouble using arms - daily activities may be difficult
  • Muscle contractures also limit mobility
  • Breathing difficulties when breathing muscles are affected
  • Curved spine (scoliosis)
  • Heart problems
  • Problems swallowing that may cause nutritional problems or aspiration may occur

Dystrophin protein found in muscle fibers.
Dystrophin protein found in muscle fibers. | Source

Causes of Muscular Dystrophy

Simply put, defective genes cause MD. It can be inherited in individuals with a family history of MD, or it can arise from a spontaneous mutation. Researchers have identified the genes that are defective for each type of MD. Often, a protein is missing that keeps muscle cells intact as is the case in Duchenne's MD.

Duchenne vs. Becker Muscular Dystrophy

Personal Experience

When I was young there was a boy in a wheelchair in some of my classes and in my Sunday school class. When I was in 6th grade this boy’s mother brought him into the Sunday school class. I knew nothing about his muscle dystrophy, but I do remember looking at his mother and noticing how tired she looked. She had dark circles under her eyes. I am surprised I noticed these things at that age, but I remember it clearly. I never got to know this boy as we had a huge number of classmates in high school. This poor boy died in my senior year. We had a picture of him in the first part of our yearbook. It was truly very sad.

Diagnosis

The diagnosis of MD is usually dependent on the results of a muscle biopsy. The muscle biopsy takes a small piece of muscle to examine using a microscope. Dead muscle tissue or abnormally large fibers are indicators of MD.

A blood test will show the creatine phosphokinase enzyme (CPk3) is leaking from muscle cells, resulting in high levels of the enzyme in the blood. This does not totally confirm this disease, but it is a strong indicator.

An electromyography and nerve conduction studies can also be done to detect the presence, location and extent of this disease causing muscle tissue damage.

A physical exam will be completed to determine the muscular dystrophy type as different types of this disease affect different muscle groups. AddItionally, a chest X-ray, an echocardiogram, a CT scan or a MRI scan will be completed. Quality of life may be assessed as well.

Genetic testing may also be performed to confirm the diagnosis.

Muscular Dystrophies in Adolescents: Mayo Clinic

Muscular Dystrophy Treatment

Unfortunately, there is no cure for this disease. Sometimes, physical therapy may help prevent some muscles from permanently contracting around the joints, for example, preventing curvature of the spine.

Sometimes, surgery is necessary to release very tight, painful muscles. Breathing exercises can be useful to delay any weakening of respiratory muscles.

Prednisone (a corticosteroid) may be ordered for temporary relief of muscle weakness. It also helps prevent muscle damage. For Emery-Dreifuss MD, heart damage may be treated with medications or the patient may need a pacemaker.

Gene therapy is being studied by researchers. This would enable the patient’s muscles to produce dystrophin, strengthening them. More studies are constantly being conducted to better understand and treat this disease.

David Anthony, a British wheelchair rugby champion in the 2012 Summer Paralympics in London has undergone 11 spinal operations.
David Anthony, a British wheelchair rugby champion in the 2012 Summer Paralympics in London has undergone 11 spinal operations. | Source

Conclusion

The prognosis for MD varies according to the type of MD. Some cases are very slow to progress while some cases progress very rapidly and from an early age. Although in some cases, patients can live well into adulthood, life expectancy is often capped at around 20 years of age. Because no cure is available at this time, rigorous physical therapy, exercise, and some medications may be able to slow the progression or relieve the symptoms.

This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2020 Pamela Oglesby

Comments

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  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Alyssa,

    Thank you so much for your very kind comments. I hope you and your husband are well also. Hope this virus leaves us soon!

  • Alyssa Nichol profile image

    Alyssa 

    3 months ago from Ohio

    Very informative! I always enjoy reading your articles as I come away with new knowledge each time. Thank you Pamela! I hope you and your husband are well! :)

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Ms. Dora,

    I think the numerous types of this disease are a surprise to many people. I like to teach, so I appreciate that comment very much. I hope you have a lovely Sunday.

  • MsDora profile image

    Dora Weithers 

    3 months ago from The Caribbean

    Thanks for these details on muscular dystrophy. Wasn't aware that there were so many types. You teach and I learn much from your health article. Thanks again.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Maria,

    This is not typically a disease that is talked about much but I sure wish there was a cure. I'm glad you found the article informative.

    I appreciate your comments as always

    Love!

  • marcoujor profile image

    Maria Jordan 

    3 months ago from Jeffersonville PA

    I learned a lot in this comprehensive post, dear Pamela.

    Thank you, once again, for raising our awareness on so many health issues today.

    Love and hugs, Maria

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Ruchira,

    I apreciate your nice comments about this article and the sharing.

    Stay safe and healthy!

  • Ruchira profile image

    Ruchira 

    3 months ago from United States

    Hi Pamela, Such a detailed article. Thank you for your time in researching this well written hub. Sharing it across.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Linda,

    I rhink it is strange that so many more men have this diseas and I sure hope for a cure in the near future.

    I appreciate your comments, Linda.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Rajan,

    I hope there is a cure soon as I hate to think of people suffereing. Thank you so much for your comments.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Vidya,

    That young man deserves a break and I hope he can have a job that he loves. This is such a heart breaking disease. I wish there was a cure also.

    I appreciate your comments.

  • vidsagster profile image

    VIDYA D SAGAR 

    3 months ago

    Very informative article Pamela. I dint know there were so many types in MD. One of our close friends son has it, but no idea which type. As a child he was so normal. As a teenager now he is confined to a wheelchair and needs constant assistance. But we admire his positive and friendly attitude. He completed his graduation and now works for a software company though he had to change jobs often depending on the facilities for specially abled. I do wish they find a cure for it.

  • rajan jolly profile image

    Rajan Singh Jolly 

    3 months ago from From Mumbai, presently in Jalandhar, INDIA.

    It is so sad there has been no cure to date for this severely incapacitating disease. I hope it is found soon. Thank you for sharing and increasing my knowledge about MD.

  • AliciaC profile image

    Linda Crampton 

    3 months ago from British Columbia, Canada

    Thank you creating such an informative article, Pamela. What a sad disease. I hope better treatments are created soon. The difference in the number of male and female cases is striking.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Peggy,

    I know. We need a cure for this awful disease. Thanks for commenting, Peggy.

  • Peggy W profile image

    Peggy Woods 

    3 months ago from Houston, Texas

    That is such a shame that there is, at the present time, no cure for this devastating disease.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Ruby,

    I hope there is a cure some day soon. I appreciate your comments.

  • always exploring profile image

    Ruby Jean Richert 

    3 months ago from Southern Illinois

    This is really a devastating disease. Your review is very good. It's a shame there's no cure, maybe some day?

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Flourish,

    I am sorry to hear some of your family members have to deal with this disease. I really wish there was a good treatment. I appreciate you sharing your family's problems and all your comments.

  • FlourishAnyway profile image

    FlourishAnyway 

    3 months ago from USA

    My nephew has Duchenne’s MD and has been bullied significantly in school because of it. Because of the genetic link they wanted to test my husband’s father and we found out he had it. He had had a stroke at 33 and that had largely concealed the impacts of MD — stiff arms, trouble walking, heart problem, etc. Your list there is almost a checklist of his issues although he had a mild case which is why it wasn’t recognized until the grandson was diagnosed. Apparently even the genetic carriers like my sister-in-law can suffer specific medical issues even though they don’t express the disease.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Devika,

    This disease is more rare in women but the person you know was obviously struggling. I hope they get a cure soon. I feel so bad for those that suffer. I appreciate your comments.

    Stay safe and healthy.

  • DDE profile image

    Devika Primić 

    3 months ago from Dubrovnik, Croatia

    I know of someone with this disease but had no idea of it in the beginning when I saw this person walking awkwardly. I now know a lot more of Muscular Dystrophy Treatment. It is difficult for his person to go on with daily activities and she is 57 yeas old.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Mel,

    The man you knew in college seems to have a wonderful attitude. I have heard that type of story so often, yet you know that person is suffering. I sure hope they come up with a good treatment soon.

    Thanks so much for your comments.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi MG,

    I think it is good to have knowledge about these various illnesses.

    Thank you so much for your nice comments

  • Mel Carriere profile image

    Mel Carriere 

    3 months ago from San Diego California

    1 in 50 million females? The only person I currently know who has muscular dystrophy is a female. Sort of defying the odds.

    In college I knew a young man named Peter Puzon who was confined to a wheelchair. He could barely move a muscle, but he was a mathematical genius who tutored people at school. He had such a great attitude and spirit that all of the rest of the tutors forgot he had this condition. Sadly, he was hospitalized frequently, and he is probably no longer with us. For Pete's sake, I hope they find a cure for this ghastly disease. Great article.

  • emge profile image

    MG Singh 

    3 months ago from Singapore

    Pamela thanks a lot for this article. Never knew much about this subject and after reading your article I found how deficient my knowledge was.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Linda,

    It is sad and cruel for sure. I pray we find a cure as well. I appreciate your generous comments, as always.

    Stay safe and healthy! Blessings to you also, Linda.

  • Carb Diva profile image

    Linda Lum 

    3 months ago from Washington State, USA

    Pamela, I didn't know that there are so many forms of this disease--I thought it was something that was present at birth. I honestly don't think I have known anyone with the ailment. When I hear "MD" I immediately think of Jerry Lewis and the fund-raising telethon he would host once a year.

    What a sad, cruel disease. I pray we can find a cure. Thank you for an informative article. Blessings to you.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Ann,

    I am amazed at the things someone with this type of disease accomplishes. That is why I featured that young man from England that plays rugby and wins.

    They have identified which muscle tissues are attacked but there is no cure now. I hope soon if will be a different story. I appreciate your generous comments. Stay safe and healthy, Ann.

  • annart profile image

    Ann Carr 

    3 months ago from SW England

    I have known people with this disease. It's sad and heart-breaking, even more for those looking after them I think.

    Considering how much progress medical science has made, it seems cruel that this one remains so difficult to tackle. Hopefully, one day the situation will improve. Also amazing is how some of those with this disease have such positive attitudes and are a lesson to us all.

    Thanks for giving us all this information, Pamela.

    Ann

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Bill,

    I know what a cruel disease this is and I wich there was a cure. Your description of the disease is about right. Thanks for your comments, my friend. Stay healthy.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Lorna,

    This is a very cruel disease and I am always impressed when someone with such a difficult disease can achieve so much. I pray a cure comes soon.

    I always appreciate your comments. Stay safe and healthy.

  • billybuc profile image

    Bill Holland 

    3 months ago from Olympia, WA

    This is one of those diseases that seems extraordinarily cruel, you know/ A very slow march into misery forever. Thanks for the information. I wish it wasn't necessary for any of us to even know what this disease is.

  • Lorna Lamon profile image

    Lorna Lamon 

    3 months ago

    Such a cruel disease and I am always amazed at how much these incredible people who suffer do actually achieve. Your article is both informative and educational as I wasn't aware of the many different types. I hope that more research is undertaken to prevent such diseases. I always learn something new with your articles Pamela. Take care.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Liz,

    This is probably not a real well known disease, but vhaving no cure makes it a bad disease. I just wantd people to know about it. I always appreciate your nice comments.

  • Eurofile profile image

    Liz Westwood 

    3 months ago from UK

    I had heard of muscular dystrophy before, but prior to reading your article I would have struggled to give much information about it. You have explained a lot in a very readable format.

  • Pamela99 profile imageAUTHOR

    Pamela Oglesby 

    3 months ago from Sunny Florida

    Hi Rosina,

    This disease is not as common as some but it is sad in the way it affects people. Then, not having any cure is not good. I apprecite your nice comments.

  • surovi99 profile image

    Rosina S Khan 

    3 months ago

    Thanks for bringing to our attention the disease, Muscular Dystrophy: its general info, causes, diagnosis, treatment, and complications. Unfortunately, there is no cure for it, which is rather sad. A useful and informative hub, Pamela.

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