Community support for people affected by muscular dystrophy (MD)

Community support for people affected by muscular dystrophy (MD)

Imagine having to watch your cute and seemingly healthy toddler wasting away before your very eyes and ending up in a wheelchair by the age eight or eleven? That is what muscular dystrophy does. Here’s how to get involved in helping these unfortunate children live a better life…

What is muscular dystrophy (MD)?

Muscular dystrophy (MD) is a broad term used to describe a group of muscle wasting and weakening gene-related disorders. Duchenne muscular dystrophy (DMD), the most common and severe form, affects mainly boys. DMD is caused by a faulty dystrophin gene. Dystrophin is a protein that helps protect and keep muscles strong and healthy. Without this protein, as in the case of DMD, muscles are weakened − to such an extent that the child finds it difficult to walk, run and jump. First signs usually appear between the ages of one and three and by age eight to eleven most are confined to a wheelchair for life!

How individuals and the community can help

September is Muscular Dystrophy Awareness Month and an opportunity to learn what this condition entails and how individuals and the community can support and help those affected.

Here are a few suggestions:

• Support the Muscular Dystrophy Foundation of SA (MDSA), a non-profit organisation that seeks to improve the quality of life of people affected with this dreadful disease. You can contact them at: P O Box 605, Florida Hills, 1716; Tel 011 472 9703; fax 086 646 9117; email
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• Create awareness. Educate yourself and make others in your community aware of MD and especially DMD. Visit the MDSA website at http://www.mdsa.org.za for information and materials to use.
• Join a support group. You can either join an existing support group such as the Parent Project Muscular Dystrophy support group founded by parents of children with Duchenne and Becker MD or start your own. The Parent Project aims to improve the treatment, quality of life and long-term outlook of all individuals affected by these dystrophies through research, advocacy, education and compassion. Contact MDSA for a list of Parent Project branches and for suggested guidelines for running a support group.
• Volunteer. Volunteer to be trained as a caregiver and to help and be part of a holistic home-based care service to sufferers and their families.
• Meet practical needs. Children affected with muscular dystrophy need motorised wheelchairs and other assistive devices that are very expensive. Become involved and get your community involved with fund raising to meet these needs. Follow the example of the Gauteng Muscle Riders, volunteers who do the Momentum 94.7 Cycle Challenge each year. Their motto is “ride for a purpose” and all the money raised goes to the Muscular Dystrophy Foundation Gauteng.
• Fund research. Until recently, the only treatment for DMD was using steroids, to help delay the progression of muscle damage, but a new scientific breakthrough, treatment, called “exon skipping” has caused much excitement and hope that when approved, the treatment may turn DMD into Becker muscular dystrophy, a milder form of the disease. However, it is crucial that MD sufferers be treated quickly before their muscles are damaged too badly. The Muscular Dystrophy Research Foundation of South Africa (MDRF) supports research into this disease with the ultimate goal of finding a cure. “Fact is we have the technology to tackle this devastating disease, but we don’t have the funding we need to do it quickly”, says Keith Foster, a scientist specialising in gene therapy at Royal Holloway University of London.

Keeping hope floating

Help and support from individuals and communities are crucial in the fight against MD. Not only do you help those that are afflicted make the most of their lives despite their circumstances but you also keep hope floating!

Sources

Cheetham, C. 2012. In just a few years this lively little boy will be in a wheelchair. It’s a tragedy that could hit any family. Retrieved from: http://www.dailymail.co.uk/health/article-2157820/Duchenne-muscular-dystrophy-In-just-years-lively-little-boy-wheelchair-Its-tragedy-hit-aNY-family.html
A day in the life of Mohini Marishka Naidoo. Retrieved from: http://www.mdsa.org.za/?page_id=514
Parent project muscular dystrophy. Retrieved from: http://www.mdsa.org.za/?page_id=393