World Duchenne Awareness Day 2020
Duchenne’s is a Muscular Dystrophy genetic disorder that is progressively degenerative. It affects 1 in 5,000 newborn boys and there is currently no known cure for this fatal disease. It is a disorder that slowly deteriorates and weakens the body’s muscles due to an alteration of a protein called dystrophin. This particular protein is responsible for keeping the muscles cells intact.
Duchenne Muscular Dystrophy can begin as early as aged 2 or 3, but in some cases isn’t diagnosed till later on in childhood. It first affects proximal muscles, those that are close to the body’s core, later affecting more distal muscles such as the upper and lower limbs. Typically a child with Duchenne Muscular Dystrophy will have trouble jumping, running and walking at a young age. It will also be quite difficult for them to stand themselves up from a lying position on the floor. Unfortunately this degeneration of muscle tissue will begin to effect the bodily systems such as the respiratory and circulation systems. Quite often by late teenage years, a person will be wheelchair bound and require assistance of medical devise’s to help with their breathing. Sadly the life expectancy of someone with Duchenne Muscular Dystrophy is around their 20’s/30’s. This diagnosis can clearly be devastating and unexpected for families.
As the body loses the ability to adopt a stable structure this can compromise a persons posture. It is important for a person with Duchenne Muscular Dystrophy to maintain a good posture as this will help them to be more functional and independent. It will also help to minimise and reduce any further damage to the body, and reduce their energy expenditure. Click here to read our article, ‘The Importance of Postural Management at Home’.
We at Jiraffe understand how sensitive an assessment for supportive and adaptive equipment can be. As a child’s condition can rapidly deteriorate, it is, at times important to have supportive and adaptive equipment in place before a child will need it. This can be a very confusing, frustrating and upsetting time for the child and their families. It is important for anyone working with children who have Duchenne Muscular Dystrophy to have an awareness and sensitivity to this. We work with therapy teams around the UK to support families to help maintain the posture of their child in sitting, standing, sleeping and meeting their bathroom needs. Our experienced Product Advisors work with a number of families and children suffering with Duchenne Muscular Dystrophy, and are always flexible, caring and here to help however they can.
To learn more about Duchenne’s, visit – worldduchenne.org/news/together-we-are-stronger/