Recently dx with SCLS. I live in Missouri so Mayo Clinic in Minnesota is a good option for me. I just talked to them and they said Dr Greipp is not at Mayo and they do not have a specialists for SCLS on staff. Do anyone know if this is true, if yes, what doctor is my best choice and where is he located? Thanks

Dr. Mark Pecker is in New York and is the only one aside from Dr. K Druey at the N I H Dr. Mark Pecker 212-746-2210 525 E.68th.Street New York

Dear caseydan: Welcome to our SCLS community! In the "Disorder Details" and "Disorder Resources" pages of this site, you and -- most importantly -- your doctors will find just about all the information that is available, so if you haven't read them, printed them out, and/or emailed them to your doctors, please do so ASAP. If you'd like to receive any of the articles listed under "Disorder Resources," email me at _aporzeca@american.edu_ As to your question, it is correct and a shame that, following last year's retirement of Dr. Philip Greipp, right now at the entire Mayo Clinic there isn't a single doctor who has shown an interest in being supportive of this community or its patients. Besides, the Mayo Clinic has not been at the forefront of research on SCLS, and you can't run to the Mayo Clinic from Missouri if and when you have an episode of SCLS. You need to find and develop a relationship with the best doctors in the vicinity of where you live -- including with a senior internal medicine physician, a hematologist, and an immunologist, preferably ones that are affiliated with a medical school or major medical center. The most important thing for you to do is to have whoever diagnosed you with SCLS, or is your primary physician, get in touch first and foremost with Dr. Kirk Druey at the National Institutes of Health, see contact details under "Disorder Details." He can be helpful in confirming the diagnosis and in answering questions your doctor(s) may have about how to proceed. Moreover, if you are willing and able to travel, your physician should arrange for you to be examined and tested at NIH, which is located in the outskirts of Washington DC.

Caseydan, I too live in Missouri and was diagnosed with SCLS this past December. I visited both the Mayo Clinic in MN and the NIH in MD. At the Mayo clinic I saw Dr. Leung ,a hematologist, who is treating some of Dr. Greipp's former patients. I learned a great deal from him, but he was very clear that Mayo would not be doing any new research on SCLS. I urge you to contact the NIH and Dr. Kirk Druey. He has seen the most cases of this disease, and has the most recent research data to share with you. They are invaluable as a resource for you and your doctors. Although I am not a patient of Dr. Mark Pecker, he was kind enough to call and email me to answer some questions. He was willing to see me if I was going to be in New York. Cristina

Thanks to each of you for your response. I have read all of the info on this site and I plan to pass it to my primary care doctor. I have not had a 'major episode', yet, but there is little doubt my symptoms are getting worse and my health is more compromised. Christina, do you mind telling me where you live in Missouri? I can send you a private email if you prefer. I am certain I will be back with many more questions. Thank you again. Anna

Anna, I would be happy to share info with you. Do you have a facebook page where we can correspond privately? Cristina

Cristina, You can find my on FB under. I noticed from one of your previous posts that you live in the KC area. I live in Joplin, so we are almost neighbors. :)

. I spent three weeks at the Mayo in MN. Dr. Kapoor is most definitely an expert on SCLS. He is a hematologist at Mayo in MN. He treated me and did extensive testing and definitively diagnosed my SCLS. My doctor highly suspected that I did indeed have SCLS, but my dependence on Medrol was masking some of the key criteria needed to seal the deal. Back to Dr. Kapoor, he has an extensive knowledge of SCLS SCLS is his key area of expertise and he teaches at the Mayo University in MN. Trust me when I tell you he comes highly recommended. Do not hesitate to see him. Arturo's advice is critical! You absolutely must have medical professionals in your area who are capable of treating you on a regular basis. I have followed his guidance and advice and I am alive today because he so graciously helped me when I needed him the most.

I agree, Dr Kapoor at Mayo Clinic in Rochester is an outstanding physician and very knowledgeable about SCLS. Dr Phil Greipp

I just found this site and am excited to have a source for support and information. I was referred to the Mayo Clinic in Scottsdale by my physician and was told that they did not have a physician to treat me. They referred me to Mayo in Rochester where I submitted all the requested information. The committee there replied that they were not capable of providing a physician to see me so I continued to seek a capable physician in Arizona. I would appreciate assistance in how to have my physician contact NIH for further evaluation and treatment guidance. Does the ongoing study there provide treatment guidance? If so, is the travel and care cost provided by the NIH or the patient/insurer? Thank you.

janiegrrriaz, Dr Candido Rivera at Mayo Clinic Jacksonville, Florida is familiar with SCLS and performed a full assessment of my condition. He is very pleasant and knowledgeable. Best of luck, Susan

-You can find the information about how to contact the NIH under disorder details and scrolling down to the section titled Tips for Living With This Disorder. When I visited the NIH in 2012, I paid for my flight to and from Maryland. The NIH paid for everything while I was admitted in the hospital. The cost of the flight is well worth the information you receive while at the NIH. I wish you all the best.

Thank you both so much! Is there a certain person I should contact at each site? I have a son in the Tampa area so Jacksonville would be a possibility as well as a brother in DC so Baltimore wouldn't be a stretch. Is the NIH site right in Baltimore?

NIH is in Bethesda, MD, right outside of DC.

Great! As a Clinical Nurse Specialist, I believe I could contribute to the research from the perspective of a health care provider.