by Feriel Chebba
Feriel Chebba is a 30 year old French woman with Duchenne. While exceedingly rare (1:50,000,000), women can get Duchenne. To learn more, please visit Feriel’s Facebook group, Girls with DMD in the World
I Am a Woman with DMD
My name is Feriel, I am 30 years old. I am French. I’m a woman with DMD.
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).
I am a triplet. One of my sisters is an asymptomatic carrier, not the other.
A Mistake?
I started walking when I was 1 year and a half but from 3 years old, I started to fall over a lot. I had large calves and I walked on tiptoes.
In 1997 a doctor at the hospital gave me a biopsy. Weeks later I was diagnosed with Duchenne Muscular Dystrophy, I was 6 years old.
The doctor at the hospital thought that it was an error made by the genetic laboratory because this disease is very rare in women and the doctor had never seen little girls with this disease. I have a mutation stop (nonsense) of exon 12.
My Disease Progression
I used a wheelchair for the first time when I was 10 years old. I lost the ability to walk after surgery on my back in 2008, I was 16 years old.
In 2012 I had a lung infection. I have had bronchitis twice, once in November 2015 and the other in February 2016.
Since July 2016 I have used a breathing machine at night. When I have congestion, I use a cough assist machine. I have physiotherapy twice a week and my physiotherapist takes care of my breathing, my arms, my legs, my hands, and my feet.
I take medication for my heart, blood pressure, asthma, my stomach, and my bones. I take a nap every day otherwise I get very tired. I do not have heart problems and my breathing capacity has increased since I started using the breathing machine.
Staying Busy
Despite having this difficult and tiring disease, I do a lot of things.
I love traveling. I have visited Cyprus, Germany, Spain, Portugal, Malta, Italy, England, Morocco, Tunisia, Mauritania, Cuba, Senegal, and Egypt. Senegal in February and I go to Tunisia every summer.
I like to swim. When I swim, I feel free. When I swim it is as if my disease has disappeared.
I do choral once a week and its good for my breathing. Music is a therapy against the disease.
I like going to the cinema, theatre and museums.
A Cure for All of Us
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”.
As a woman with Duchenne Muscular Dystrophy, 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.
In writing this article I think about all the very strong people who have this disease, you are heroes!
I hope a cure is found for all of us.
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