MD: a serious disease whose effects get worse with every generation

MD is a family drama with many different personal stories

Life with MD

Edgar

“And then there was ….. Myotonic Dystrophy”

Life with MD

MD Film

“I have MD”. More awareness leads to fewer deaths

Life with MD

Desiree

“Joshua was taken away immediately after birth, he couldn't breathe and was very limp”

Life with MD

Als MD stopt…

A clip in which we give voice to our hope, but in which we also say goodbye to those we have lost.

Life with MD

Glenn en Ilke

"Rune has the congenital form of MD. We were given a bleak outlook for the future"

Life with MD

Bianca

"MD is a serious disease that has already claimed 6 people in my immediate family"

What is MD?

MD (Myotonic Dystrophy) is a serious, hereditary disease. The effects get worse with every generation. It is often only discovered when a baby has severe problems, or when a child dies shortly after birth. Suddenly, for other family members, the pieces of the puzzle fall into place: unexplained complaints and relatives who died young. The cause, a genetic defect, is known. What’s needed now is money and attention to develop a treatment. MD occurs nearly 10 times more frequently than the muscle disease ALS, and 4 to 5 times as often as FSHD/SMA.

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First meeting in Sweden

The very first Swedish myotonic dystrophy meeting took place in Göteborg! With the help of MD Europe we could organise this meeting where information was shared amongst patients, doctors, EuroDyma and MD Europe. Check link below for a short after movie.

after movie MD Sweden