Healthy Living

Support Groups for Muscular Dystrophy: Finding Genuine Connection and Understanding

Support Groups for Muscular Dystrophy: Finding Genuine Connection and Understanding

Key Takeaways

  • The Muscular Dystrophy Association is the foremost organization that provides assistance to those who have muscular dystrophy, ALS, and other related diseases.
  • The Parent Project Muscular Dystrophy has initiatives dedicated to family members of those who have muscular dystrophy.
  • There are also different support groups for specific forms of muscular dystrophy.

A lot of people are suffering from muscular dystrophy (MD). The most common forms of MD in children are Duchenne and Becker, and about 400 to 500 boys are born with these in the United States each year. About 70,000 people in the UK suffer from MD. This condition, which is usually acquired by people genetically, has distressing effects to your muscles. As time goes by, the symptoms get worse, and it eventually leads to disability. As of now, there is no known cure for muscular dystrophy. However, there are multiple treatments that could help ease the pain or delay the symptoms that you are experiencing. One of the things that you could do is join a support group for muscular dystrophy. It allows you to meet other people who have this condition, as well as those who take care of these people.   

Importance of Joining a Support Group

Individuals who suffer from certain illnesses should not only stick to getting treatment from doctors and taking their prescribed medications. Despite the support provided by your family members and doctors, it would be best for you to interact with other people who have the same condition as you. It is a different way of dealing with your illness.

There are times you will get the feeling that your family members don’t understand how hard it is to manage your condition. Those who have muscular dystrophy would slowly experience being disabled. The struggle you will experience as you go about your day to day living would be at times unfamiliar to your loved ones. They would be able to empathize, but you will question at times whether or not they truly understand how you feel. This could be stressful to you and your loved ones. It might cause a strain to you or even worsen the burden. Thus, it is highly recommended to join a support group for muscular dystrophy.

There are a lot of benefits you could get from joining a support group for muscular dystrophy. Patients who suffer from this condition would be less isolated to the outside world. Attending the meetings arranged by the support group would help you express your feelings and frustrations openly. Finding a group to talk about the problems you encounter helps reduce the amount of stress you have. Here, you will never be judged. You know they understand because they have, more or less, the same experience.

Finding a Support Group You Could Join

There are multiple ways to find a support group you could join. Here are the things you can do:

  1. Ask for recommendations from your doctor. Doctors or specialists are usually a part of organizations that help individuals that have certain illnesses. Just ask whether there are existing support groups that they can recommend for you to join.
  2. Search online. Organizations already have their own websites that you can search online. They also provide the location of the nearest support group in your area.
  3. Contact a person you know with the same condition.
  4. Get in touch with organizations that are specifically catering to your disease.

Different Support Groups for Muscle Dystrophy

Muscular Dystrophy Association

The Muscular Dystrophy Association is the foremost organization that provides assistance to those who have muscular dystrophy, ALS, and other related diseases. They have multiple facilities located in the United States and Puerto Rico. They provide support to more than 100,000 individuals suffering from MD.

The MDA Care Center offers state of the art facilities as well as highly trained health care specialists to provide support for those diagnosed with MD and their family members. They have about 150 MDA Care Centers scattered across United States and Puerto Rico. The center can allow patients to have one-on-one sessions with their specialists. About 10,000 individuals were able to avail this service offered by MDA Care Center. They can also provide assistive devices to their membership in order to improve their ability to move. Moreover, summer camp is also hosted yearly to cater to children suffering from MD. This allows children suffering from MD to be able to meet other people of their age suffering from the same condition.

Parent Project Muscular Dystrophy

The Parent Project Muscular Dystrophy has initiatives dedicated for family members of those who have muscular dystrophy. The organization founded F.A.C.E.S. which stands for Families Advocating, Connecting, Educating, and Supporting. This outreach specifically caters to families who have members that suffer from Duchenne or Becker muscular dystrophy. The organization provides a mentoring program for the family to understand the disease. It helps the family get connected to their local support group for better access to their services. The initiative started in New Jersey at 2008. They have expanded to multiple states and aim to increase the amount of support groups found in other places. As of now, the existing groups are found in New Jersey, Illinois, Arizona, South Texas, Colorado/ Wyoming, North Texas, Pacific North West, Michigan, Northern California, Western New York, Ohio, Southern California, Tennessee, Florida, Nebraska, Virginia, Northern Florida, North Carolina, Georgia, Minnesota, DC, Maryland, and Western Pennsylvania.

They also aim to increase the awareness of Duchenne and Becker through multiple advocacy campaigns. They try to raise money for improving PPMD research, advocacy, care, and other education programs. Check out their website to be able to know which area coordinator you should reach out to.

FSH Society

FSH Society caters specifically to those who have been diagnosed with facioscapulohumeral muscular dystrophy. This organization always has volunteers that would be able to assist individuals who have questions regarding their condition. Unlike other support groups for muscular dystrophy, this one helps patients or family members through online discussion. Individuals get to talk to their support team through signing up on their website. The society yearly hosts a Patient Connect Conference wherein patients, family members, doctors, researchers, and other health experts get to meet and talk about FSHD. It is a great opportunity to reach out and exchange stories to manage your condition.

Myotonic Dystrophy Foundation

This foundation is known to be the world’s largest organization specifically for myotonic dystrophy patients. They provide help through funding research for the cure of the disease, providing resources and support to individuals, as well as encouraging different government agencies to increase funding for hospital services. The great thing about this organization is their international support groups network. Their program, which is Warmline and Phone Buddies, allows for their members to connect with each other even if they are from different parts of the globe. The MDF support group has 14 groups in the United States and Canada. They will be able to help you get in touch with a local support group near your area if you have one, or they can help you set up your own support group. They also have an MDF Caregivers Support Group program. They usually conduct discussions on their Facebook group and live chat sessions twice a month. The discussion can only be viewed by members of the group.

The existence of multiple support groups has already helped a lot of individuals to ease their suffering. This group can be easily accessed. You can opt for online group discussion. You can also go beyond by participating in the activities offered by the organization that you want to be a part of. Just check which organization is near you through their website.