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 Nadia Maalem, France by Debbie Marshall (archives)

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MessageSujet: Nadia Maalem, France by Debbie Marshall (archives)   Dim 19 Juil 2009 - 14:43






Around the World



MG Around the World is a regular feature of the MGnet Connect Newsletter. We feature a person with MG each issue, traveling all over the globe via e-mail to interview him or her. If you know someone who would make a good subject, please contact Kathleen Knorr,irishkathleen2@yahoo.com .


Nadia Maalem, France
by Debbie Marshall



http://images.google.co.ma/imgres?imgurl=http://www.mgfa-mgnet.org/html/newsletter/images/france.gif&imgrefurl=http://www.mgfa-mgnet.org/html/newsletter/fall06.php&usg=__Z9JocaN4aUlRAO5qn86hQNUmD5w=&h=118&w=127&sz=4&hl=fr&start=10&um=1&tbnid=ALRBOmQoyfDtVM:&tbnh=84&tbnw=90&prev=/images%3Fq%3DAAMM%2B%2Bidrissi%26hl%3Dfr%26um%3D1







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It wasn’t jet lag. It was myasthenia gravis. But Nadia Maalem of France didn’t let MG stop her from reaching out into the world.
To deal with her disease, Nadia turned to the Internet. “After the initial shock and depression, I looked for information,” she said. “The Internet has been very helpful. That’s how I got in touch with an MG patient in my own city, who had been living with MG for 20 years. She has been supportive all along.”
Nadia has found support for herself and offered help to others through a couple of Internet forums: the Myasthenia Mail List ( ocular@asu.edu ) and an online forum created by the Moroccan founder of the Association of the Friends of Moroccan Myasthenics (AAMM).
She credits the founder of AAMM, Dr. My Ahmed Idrissi, with doing a wonderful job for myasthenics in his country and around the world on his Internet forum. “We can freely talk about any topics, not just the disease,” Nadia said. “Dr. Idrissi is an inspiration to all of us.”
As Stan Way explained in an article in the Myasthenia Gravis Foundation of America publication Foundation Focus in Fall 2005 (www.myasthenia.org/news ), Dr. Idrissi was instrumental in getting generic Mestinon to many patients in Morocco through the generosity of Khalid Zia and the Pakistan Myasthenic Welfare Organization. (Khalid Zia was profiled in a previous “Around the World with MG” article.)
Nadia was able to meet Khalid in London to thank him on behalf of Dr. Idrissi’s AAMM. She also met Stan, a member of the MGFA Board of Directors, in Paris and thanks to him, had the privilege of meeting with leading international scientists. She does her best to keep informed about the latest research involving MG.
“The Myasthenia Mail List has helped me an awful lot,” Nadia said. “There is an international dimension to your American mail lists that I would like to pay homage to. Just imagine! I could have majored in Latin and French literature. Fortunately, I chose English, which helped me to read and translate all the posts from all over the world from all the patients asking for help and information, not only about MG but also many other autoimmune diseases.”
Nadia has sent donations of Mestinon to Morocco from friends who have cut down on their daily intakes. She herself is taking Mestinon that is three years old.
“There are so many people who have no access to basic treatments all over the world. MG patients in Morocco are desperate for Mestinon, which is no longer supplied in their country. Third-World countries used to import the drug, but can no longer afford it.
“Trying to help others, especially patients from other countries who have little or no access to basic treatment, has been my best therapy,” Nadia said. “MG may have weakened my physical strength (so does aging, after all!) but I never accepted it could also shrink my environment! I’m also confident that a cure for MG will be found.”
Nadia, who is 56 years old, thought she was suffering from jet lag when she returned home after a three-week trip to Arizona and New York City 11 years ago. However, the ophthalmologist she consulted for blurred vision immediately referred her to the nearest hospital’s neurology ward.
After an MRI, a lumbar puncture, EMG and a Tensilon test, she was diagnosed with MG and told she had a thymoma the size of a cauliflower. A thymectomy and six weeks of radiotherapy followed, although the thymoma was not malignant.
The operation exacerbated the MG and Nadia stayed in intensive care for two weeks. She started prednisolone (a form of prednisone), and had IVIG and plasmapheresis. Now she takes 8 mg of prednisolone every other day and 180 to 240 mg of Mestinon a day.
“My MG flared up two years ago and I was given a five-day treatment of IVIG,” Nadia said. “My symptoms are mainly blurred vision, and some difficulty chewing and speaking when I am tired or under stress.”
Nadia had to give up her job as a teacher for one year after she was diagnosed, but since then she has taught English to 18- to 20-year-old students. In addition to French and English, she speaks Spanish.
“I used to travel abroad,” she said, “but I’m afraid of traveling long distances now. I like walking but had to give up jogging and cycling. I love reading and listening to music and I am very fond of cats!”
She occupies “a very small apartment in an 18th-century house a two-minute walk from the river Garonne” in Toulouse, France. She no longer hikes in the Pyrenees, but does “swim, or paddle rather, in the Mediterranean.”
Nadia quit driving because of blurred vision and photosensitivity, but admitted, “I was such a bad driver that it must have been quite a relief for my family and friends to have me off the roads!”
Nadia has a 29-year-old son who is an engineer. “He saved my life when I started choking,” she said. “He immediately called an ambulance. If he had not realized the situation was critical I would have stopped breathing altogether. He was 18 at the time. I can still remember his frightened face when he saw his Mum with tubes all over, struggling with the breathing machine!”
Nadia reported that France has quite a few excellent MG specialists and researchers. Apart from Mestinon or Mytelase (both brand names for generic pyridostigmine) the other treatments in France are Imuran and prednisone, plasmapheresis and IVIG. “As far as I know, CellCept is not routinely prescribed,” she said.
“All those treatments are entirely free as France’s national health insurance system allows patients to get 100% coverage once they are diagnosed with a chronic condition,” she added.


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