Dear Arturo,
Sorry I forget the process to modify my profil and give you here more information about me, hoping my english will not be to bad so as I am a french woman.
Best regards
Maggy
As new member but with diagnose of SCLS in April 1988 after a severe collapse and a first hospitalization in distress, I think I will, probably, be at time the “oldest” survivor so as more than 20 (twenty) years later I am always alive in spite of a very dark prognosis and a life expectancy of about 6 months . After reading all the messages on this forum, I want to share my experience in this very fearful fatal disease without codified therapy at time and send to all a message of hope.
The first troubles appear in June 1954 by hemorrhagic fever attributed to hemorrhagic measles. . From then on nothing was never the same : physical exertion in particular induces an enormous fatigue prohibiting me from leading a normal life of a little girl I was 11, (no sport, intolerance to cold water, sunshine, heat, very strong headaches, ...) with repeated attacks at regular intervals, approximately every 6-8 years with nearly all described disorders not always the same and not at the same time : intestinal problems, generalized edema, fatigue, myalgia, dizziness, hypotension, memory lost, rapid swelling and compartment syndrome, hypertension, and at least an unexplicated memory lost during 2 hours … until June 1986 when my condition worsened and put an end to my professional life. Postgraduate in foreign trade, I was then active in international trade as an Administrative Export Manager what means lot of business trips and responsibilities but interesting life.
My first chance was to be supported during this hospitalization in distress, followed by several others, by an emergency room doctor, now Prof. Jean-Paul FOURNIER, who, despite the extreme rarity of this disease, was able to detect signs and "saved" me from certain death at the time by not practicing filling or injection, but I do'nt have no more information about this
which after much research, was unfortunately not able to offer me an allopathic treatment to improve or extend my life expectancy, while only a dozen cases were than known, all deceased. I am still in contact with him, working at the University Hospital at NICE, and he follows me regularly.
My second chance was to meet Dr TRAN VIET DZUNG, a world-famous acupuncturist leaving in NICE, whose objective is to combine Western Medicine and Traditional Chinese Medicine. He has kindly considered my case and initiates a treatment by acupuncture that keeps me alive in satisfactory conditions, followed without interruption since June 1989, without a major crisis to date. At my knowledge currently several other patients in the world are successfully treated at the same manner and still alive in good life conditions.
In December 1999, I was under observation by Dr. AMOURA at PARIS (PITIE SALPETRIERE HOSPITAL) research protocol for the Clarkson’s Disease (now SCLS).
I will meet Prof. FOURNIER in the next time and maybe will be able to give you more details.