It is now 12:06 am on Christmas, 2010. I am very thankful for this moment. I was doubtful, last April, that I would make this day. I am also thankful that all of you are also still here. So I would like to recognize those that made my life better: My wife Nancy, so very loving and the most helpful in these times. My Doctor, John Barrett, for taking care of me and my family. Arturo, for doing so much for the CLS community. CLS patients throughout the world. St. Clair Hospital, Dr. Fino and staff for support through the years. Rareshare for enabling us all to communicate with each other. Mystery Diagnosis for providing more awareness of CLS. The NIH and Mayo for their work on CLS. Merry Christmas Walt

Walt- Thank you beginning to express some of what my husband and I are feeling today as well. Our son had his diagnosis confirmed on Christmas Eve 2009 last year by Dr. Greipp- for which my husband and I will be eternally gratefully for him checking his email while on vacation. Here we stand one year from diagnosis. We cannot begin to explain what it meant to wake up this morning at our house and see our son have Christmas at home and not in the ICU of our Children's Hosptial. My sister had video of last year, and our son, Connor, looked at the video and could still tell us about his picc line, pigtail heart drain and regular iv. My husband and I need to thank God for our faith and his ability to place other people and the resources we need and needed to help pur son. Currently, he has a standing order for prednisone (sp) should an attack start. And while each of our journies are different, Walt, you are right in the fact that we are all still here unlike some others. May this wish all of you a 2011 that brings more insight into SCLS and attack free health!

Hello ! I am relatively new to this board (but almost 22 years of SCLS after diagnosis and 5 collapses in 1988) and still alive in satisfactory living conditions only due to a treatment of acupuncture since 1989, and as after different meds didn’t prove very satisfactory when they were tried out. Sorry for my English, I am a 67 years old French woman who leaves in France. Maggy

Hi Maggy! I am most interested in the acupuncture treatment. Can you tell more please? Have you tried all the usual meds that the Mayo Clinic recommends?

Hello, All the treatments recommended by the Mayo Clinic or Dr Amoura, don’t exist by my first hospitalization in shock and collapse on April 5, 1988 for this very rare disease and only a few cases (approx. 12 mostly deceased) was related in the world medical literature at time since 1960 and the first medical communication of Dr Clarkson in the American Journal of Medicine (1960; 29:193-216). I was very lucky – thanks God – as by this time, a hospital MD passing, by chance near to my bed, through the EM department in this university hospital complex, recognized immediately the symptoms of a capillary leak syndrome by diffuse angioedema of perhaps like Clarkson’s disease. Diagnosis of Clarkson’s disease was done beginning 1989. My second chance: a most renowned acupuncturist (MD) leaves in my country and so as he wants to link both medicines and teaching acupuncture in the same university resort, initiate in June 1989 this experimental acupuncture treatment of me. At present, 5 or 6 other persons in the world (USA, Brazil) are at life by the same therapy teaching by my acupuncturist in several foreign medical universities. These both MD are very important peoples in my life and I am very grateful for having taken care about me for a so long time and to be always present if necessary. Sorry due the French laws it is not possible for me to publish their names but if you want we can correspond together by private mail about SLCS. Maggy

Hi Maggy. I am interested to know more. Could you please contact me on sally.egdeg@hotmail.com Thanks Sarah