Girls with Duchenne: The Great Forgotten

Only one woman in 50 million is affected by Duchenne muscular dystrophy (DMD). Considered as a male disease, DMD usually affects boys (1 in 3500). Some people don’t know that they exist. Those women affected by DMD are there, and they are suffering from this lack of education. Know that DMD is a rare disease and difficult to live for a boy. So, just imagine what it could mean for girls. They face many additional obstacles; they aren’t unicorns they exist, and DMD girls deserve to be heard. Here’s what Feriel had to say and without censorship.

 

Feriel’s seeks equality

Feriel Cheba: “As a woman with this myopathy, I am fighting to say that us, girls with Duchenne’s myopathy, we exist. We are here, we too, we do want to live and have the right to dream about recovery and a better life. »

 

A world traveller despite DMD

Feriel is a young woman of 26 years old, native of France. Tiredness related to DMD didn’t stop her to become a world traveller. She visits many countries going through Europe, Tunisia, Mauritania, Cuba and Senegal to only name them. She is also a cinephile and loves everything that involves culture. Simply put, she loves life. She fights to live life to the fullest every single moment.

 

A sense of abandonment

It is in 1998 that she received the diagnosis of Duchenne’s myopathy (myopathy is the term used in France). She was only six years old, and it was already challenging to hear this news. However, repeating continually that she has a male disease amplifies her pain.

Feriel Cheba: ” It’s very hard as a parent to learn that your child has this disease especially when doctors tell you constantly that it’s a male disease. Incomprehension and unfairness are high. Why do so many doctors think this disease doesn’t affect women? It is time now to tell talk about it with young medical students, it has to be told during their genetic courses that Duchenne’s myopathy affects mostly boys and sometimes girls too”.

 

Hurtful words

She also gets many hurtful comments. There is a lack of resources and answers. In fact, it is even harder for girls to access clinical trials. Two neurologists told her that some clinical trials were open for boys exclusively, what she thinks is an injustice.

Feriel Cheba: “People do not believe me. They tell me that it’s impossible that I am affected by this disease. People don’t like what is rare. An internist even told me that it was an anomaly. Am I unnormal? No, I don’t think so. I am only different as everyone else”.

 

The hope for recovery and everybody

Despite all the difficulties encountered, she remains hopeful. She takes advantage of every moment spent with her family and friends. She also knows the existence of a treatment that can help with her specific mutation. Although, she can’t access it since its exclusive for walking patients. In her heart, she keeps hoping and dreaming of the day there will be a treatment for everyone suffering from DMD.

 

More about Duchenne: Duchenne muscular dystrophy – La Force DMD

Facebook Group: Girls can get Duchenne Too

MDA > Girls don’t get Duchenne or do they

Myopathie de Duchenne

 

 

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