I had the opportunity to stay a few days in New York and Washington, invited by Arturo Prozecanski and his so charming wife. I was lucky to be examined at the NIH by Dr. Kirk Druey, MD senior laboratory investigator and his team. The NIH is easy to find : located in Bethesda, Maryland, just 10 miles from the center of Washington, D.C.
They took my blood to be examined in the hope that more patients will soon permit to discover the mechanism of this rare syndrome. I take advantage of this forum to encourage all SCLS-Patients treated by IVIG or not to contact the NIH through their General Doctor and undergo a blood test completely painless. By multiplying the exams one day researchers will find the item or items that cause SCLS. A curative treatment (and not only prophylaxis like now) will then be considered.
I warmly thank Arturo Porzecansky for his involvement in this rareshare-site. Thanks to him SCLS-Patients and their family are no more orphans and a prophylactic effective treatment is beginning to be offered to all new or not new Patients and financial support by insurers is becoming the rule.
Claude Pfefferlé-Switzerland