The DMD Guy ‣ What is Duchenne Muscular Dystrophy? (DMD)

To raise awareness for Duchenne muscular dystrophy (DMD) I have decided to start explaining what it is and how it affects someone diagnosed with it. Firstly, there are several types of muscular dystrophy, however in this post I will be focusing on Duchenne muscular dystrophy.

Duchenne Muscular Dystrophy is a Muscule-wasting condition, this is caused by lack of protein called dystrophy. Also causing progressive muscle weakness. This condition normally affects boys and about 100 boys are born with it each year in the UK.

Currently there are about 2,500 boys and young men like me living with DMD. Looking at the statistics, having a child with duchenne muscular dystrophy is about one in every 3,500-5000 male births.

When does it start? This normally affects boys early on in their childhood, however, some muscles in boys deteriorate much slower than others. Therefore there is no exact age when a wheelchair may be required for everyday use. For me I required one at the age of 11.

With the help of physiotherapy and steroids, muscule strength can be improved. Ultimately slowing down muscule weakness as much as possible. Later, as muscules begin to weaken vital organs such as the heart and lungs become weak. To help with the heart, beta-blockers can be prescribed.

Eventually oxygen will be required during the night, later also during the day. Cough machines are also used to help clear mucus to prevent infections. Some may develop dysphagia, this is when young adults have difficulty chewing and swallowing food. If there is a extreme risk of choking a feeding tube in the stomach may be needed.

Although life expectancy may be low and there is no cure, people with DMD have been able to live until their 30s and 40s. Due to medicine advancements and technology, the life expectancy is increasing.

Future treatments could include stem cell or gene therapy. Currently there are hundreds of clinical trials happening worldwide. One day we will find a cure. Having muscular dystrophy is not the end, and life can still be enjoyed to the fullest.