In May, my family doctor left the practice. She was a nurse practitioner, and understood my SCLS. I developed swelling and symptoms of an episode. I called the hematologist I was seeing. He left his practice last week. This is very frightening to me. I called the hematologist office today, and spoke to the Dr. on call. He said that this is not a problem for a hematologist. I went through this 15 years ago. and saw many specialists who knew nothing about my condition I was in Thomas Jefferson University Hospital in 1998 for more than two months. Several years ago, I saw Dr. Soule at U of P in Philadelphia, and he left his practice several years ago. (Immunologist). Please, if you know of a physician who is familiar with the condition, please let me know *asap.* I don't want to end up in the hospital, especially one where they don't know what to do. I live in Cape May County, NJ. I am willing to travel a reasonable distance to see a doctor Thank you in advance for reading this, and for any information you can share with me. Eileen. My husband and I are celebrating our 50th anniversary with a party in two weeks which is a wonderful thing. Hopefully, I will be well then.

Eileen, While the retirement of our medical providers can be a traumatic moment -- I dread the day that any of mine will retire, whether it is my dentist or my podiatrist, because through trial and error I have found some great professionals -- their retirement can also provide an opportunity to have one's health evaluated with a fresh pair of eyes, possibly generating useful insights. For example, you have suffered from episodic swelling, are a member of two other communities here in RareShare, and as per your profile page you have been treated with Prednisone for a very long time. You were diagnosed with SCLS back in 1998. Well, the fact is, a lot has changed in the past 17 years. For one thing, the understanding of a variety of swelling disorders, including SCLS, has greatly increased. For another, a whole host of new medications has come on the market, and the risks and benefits of older medications is understood much better. The long-term use of Prednisone and other steroids is generally frowned upon by the medical establishment. I once learned about a patient diagnosed with SCLS who had been treated with Prednisone for very many years, and I was told that she eventually died of complications related to her medication -- and not to SCLS. Therefore, my first suggestion is that you obtain a copy of your medical records from the nurse-practitioner and hematologist who followed your case -- now, before they are archived out of reach. Second, I suggest that if you haven't done this before, or if nobody did it on your behalf until now, you send a copy of those medical records to Dr. Kirk Druey at NIH requesting an evaluation, giving the contact information for those healthcare providers you have seen. (If you have recently been evaluated by Dr. Druey, then it wouldn't hurt to touch base with him and ask for some suggestions for physicians in the Camden/Philadelphia area.) A visit (or new visit) to NIH (in Bethesda, MD, just outside Washington DC) would be a great way to confirm or alter your diagnosis, and to review the therapy options now available to you on the basis of an updated diagnosis and a fuller evaluation of your present state of health. Dr. Druey and colleagues are experts in all kinds of inflammatory illnesses. His contact information appears toward the bottom of the tab "Disorder Details." Have a wonderful anniversary!

Thank you Dr. for the rapid reassuring response. You have helped me calm down. I will follow your good advice. I will update when I get some more information. Eileen

I am so glad I found this site , very useful information .My question is we have a wonderful learning hospital here in St Louis Mo Washington University do you have knowledge of any doctors that would be familiar with this condition at Washington University ? Again Thank you for the information

There are indeed many wonderful physicians affiliated with Washington University in St. Louis, but I don't know of any who have handled patients diagnosed with, or who have published about, SCLS. If I were new to town, and I was a confirmed SCLS patient, I would make an appointment with one of the senior faculty physicians (Professors or Associate Professors) who do Internal Medicine and specialize in Allergy/Immunology, like Dr. James Wedner (who is the Division Chief), or in Internal Medicine and Hematology, like Dr. Morey Blinder or Dr. Stuart Kornfeld. Welcome to our Community, by the way. Please tell us about your own struggle with illness on your profile page. We need as much information as possible (on your ailments, diagnosis, treatments, etc.) in order to make further progress on an exceedingly rare disease like SCLS.