Give Your Support to Muscular Dystrophy Sufferers
Muscular dystrophy is a condition where the sufferer’s muscles degenerate over time and in some cases, to a life-threatening state. There are around 20 different types of the condition, seven of which are particularly prevalent.
Living with muscular dystrophy, either as a sufferer or close family member and carer, can be tough, particularly when the symptoms begin to worsen, making it hard to do even the simplest things. With over 70,000 people in the UK living with Muscular Dystrophy, it’s a disease that affects a relatively large number of people and awareness of it desperately needs to increase.
Symptoms and Diagnosis
Muscular Dystrophy is a genetic condition and can’t be prevented. Due to the different types of the disease, the symptoms and diagnosis can become apparent at any time from birth through to adulthood. While there is no cure for Muscular Dystrophy, there are ways to help manage the symptoms in many cases – but not all.
Duchenne Muscular Dystrophy is the most common form of the illness and the symptoms typically become noticeable between the ages of 12 months and three years. They include:
- Delayed speech development.
- Difficulty walking, running and jumping.
- Struggles to climb stairs unaided.
- Find it hard to stand up after being on the floor.
- Learning to speak have difficulty walking, running or jumping
- Behavioural and/or learning difficulties.
Some sufferers of this form of Muscular Dystrophy degenerate so quickly that they are unable to walk and must use a wheelchair by the ages of between 8-14. Life-expectancy of males with Duchenne MD is 20-30 years of age.
The other six more common forms of Muscular Dystrophy are:
- Myotonic dystrophy.
- Facioscapulohumeral MD.
- Becker MD.
- Limb-girdle MD.
- Oculopharyngeal MD.
- Emery-Dreifuss MD.
These and other forms of Muscular Dystrophy can develop at any age in child and adulthood. And, while some share similar symptoms to Duchenne MD, they’re rarely as severe or develop to life-threatening levels.
Working on Raising Awareness
There are a number of charities in the UK and around the world that work hard to help support people affected by MD, while also raising awareness of the condition too. Muscular Dystrophy UK is a charity that not only raises funds for research, but also campaigns to raise awareness across the country and in Parliament.
The charity works with the Government and the NHS to help provide the services needed by people suffering with MD. They have numerous campaigns and young MD sufferers are also heavily involved.
There is also an annual Muscular Dystrophy awareness month that takes place every September and includes World Duchenne MD Awareness day on September 7th. Its aim is raising awareness about exactly what Muscular Dystrophy is, the different types of the condition and what’s needed to help those suffering from the condition and also to further vital research. It’s also something that everyone who wants to and is affected by MD, in anyway, can help with.
As with all charities, taking part, or running a sponsored event is a great way to raise funds for research or for groups that provide those with MD the opportunity to do something really special. Other ways to raise awareness is to start with yourself – join a group or volunteer as a regular or occasional carer for someone suffering with MD.
People who are living with MD, are diagnosed with it or care for someone with the condition all need more support, and even just a little of your time and effort can make a difference.
You can find more MD related resources here:
https://www.nichd.nih.gov/health/topics/musculardys/conditioninfo/pages/treatment.aspx
https://www.cdc.gov/ncbddd/musculardystrophy/data.html
https://www.action.org.uk/appeal/duchenne-muscular-dystrophy?gclid=CLu6hrKH5dMCFUg8GwodkZwM4A