Less pain for Morgane

Hello,

My name is Morgane, I’m from Brittany, I’m 25 and I’ve been suffering from SED, a rare, orphan genetic disease, for 10 years now.

Until I was 15, I led a completely normal life, I went to school, I had friends, but my life was turned upside down.

After several years on the battlefield, supported by the AMADYS association and neurologists, a word has finally been put about my illness.

In 2018, I was diagnosed with hEDS, which affects connective tissue, accounting for 80% of the body, and explains my various symptoms, the main ones being: dystonia, chronic pain, subluxations and dislocations, constipation, fatigue, etc. The disease handicaps me to the point where I can no longer walk and have permanent pain. So I have to take morphine, which only gives me occasional and partial relief, because I can’t take it long-term to avoid becoming dependent.

I’ve been home-schooled by the CNED since my second year, and I’m currently in the 2nd year of a BTS in Accounting and Management because my illness has prevented me from studying normally. I’m dependent for everyday activities and I can’t lead a normal life. Despite this illness, I’m as cheerful and positive as I can be, and I’ve kept a few close friends and the support of my family.

Today, I’m still hopeful, because there is a solution to relieve my pain: transcranial and peripheral magnetic stimulation using a high-performance machine available at my doctor’s surgery in Rouen, one of the few in France to have it.

The problem is that we can’t go every month as indicated for chronic pain (my parents are unavailable and I can’t afford the hotel and catering for the 2 days needed) and when I have attacks of dystonia, the stimulation has to be done immediately to stop them.

So the ideal solution would be to have this machine at home, but it costs €20,000, a huge sum that we don’t have at our disposal and which is not covered by Social Security.

This machine is the MagPro R20 from Magventure, manufactured in the United States and Denmark, compliant with ISO 13485: 2016 and CE approved by Europe.

Dr Parain, who follows me, is the neurologist who has studied the benefits of this machine the most and has written several scientific articles attesting to the effectiveness of the stimulation sessions. He has also created a website (http://www.drparain.fr) where he explains the benefits of the machine for a number of illnesses.

My family and I would be extremely grateful if you could help us with this purchase, either financially by making a donation or simply by sharing the kitty with others.

THANK YOU ALL FOR YOUR HELP!

Morgane and her family