Excuse my English, I use translation software. My medical history briefly. I started coughing June 1995. Swelling up of the face and body. Had many attacks with bursting pain, fainted several times. Collected on me 14 kg fluid in two weeks. After finger pressure remaining pits. Problems to open my eyes, the skin was blue, the force lost more and more. Looked for help from the doctor who gave me Diuretics I became worse. Come to the hospital stayed three weeks but in larger doses Diuretics I became worse. They sent me to a larger hospital. After eight weeks of study of 27 doctors from June to November and a rapid progression of the disease, I was diagnosed with SCLS of a professor who was aware of three patients with this diagnosis during his 37 years as Doctor. He told me and my family it was a rare life-threatening disease and a future with many years of medical checks and they are trying to help me. Plasmapheresis started with a transfer of plasma albumin, Protein A immunadsorbtion immunoglobulin, Methylprednisolone Brickanyl and Theo-Dur. This was done in 5-6 hours every day for ten days. I improved and got home in December. Thereafter, regular medical checks. Continued with prednisone for 1 year. Brickanyl and Theodur of 2.5 years, plus diuretics. After 7 years died my doctor who gave me the diagnosis and treatment and was my security of my illness. For the past seven years, none of ten doctors helped me. In my desperation I prayed to see a doctor to help me. Come to the hospital to have my medical history and asked for help. The doctor says forget diagnosed SCLS. As I got in 1995 and was treated for. My family sees that I am suffering they helped me search for information abroad. RareShare Member since 2010 in which many describe symptoms and experiences that I living with no medical help. My question. Is it disagreement or is it just ignorance among the doctors on the SCLS-diagnosis? Best wishes from irerolper

Mostly initial ignorance but then also unwillingness to spend time doing the homework on this rare disorder (namely, read the literature and follow the instructions), including consulting with the two SCLS experts available: in the United States, Dr. Philip R. Greipp at the Mayo Clinic, and in Europe Dr. Zahir Amoura at the Hospitalier Pitié-Salpêtrière in Paris. Perhaps you should contact the Swedish Information Centre for Rare Diseases (Informationscentrum för ovanliga diagnoser) at the University of Gothenburg for advice -- but not on SCLS -- and if you want to know whether you really do have SCLS, consider spending time and money to go either to Paris or to Minnesota. See Disorder Details for more information.

Dear Arturo Thanks for the answer and your helpfulness. It warmed my heart to get an answer. This information is of great value to me. Best wishes from irerolper

Arturo Where do u live? What are those doctor's thinking my daughter has scls and thank's to a great group of doctor's she is stable.. Please let me know so I can help Jessica

I live most of the time in Washington DC, where there are 2 other patients with SCLS who belong to this community, and otherwise in New York City (incredibly, no other patients that I know of). For more details, see my Profile page. It would be nice if you filled out your Profile page to indicate where you live and wrote a couple of paragraphs about your daughter's case. We need to identify (though not by real name) as many SCLS patients as possible and to reach out to them, in case they wish to volunteer for medical research purposes or they have lessons to teach the rest of us.