I just found that my family Dr. is leaving. After 12 years, I thought I'd finally found a family Dr. willing to work with me about the SCLS. I know I read that someone on rareshare went to a Dr. at the Univ. of Pa. Can you please share that information, or any other Dr. familiar in my area. I'm still waiting to hear if I am accepted into the study at NIH. Thank you for any information you can give me.

Hi, I live in south jersey and here are my doctors who are treating me for CLS. Benjamin P. Soule, M.D. - (worked at the NIH with Dr. Druey in the past) Penn Medicine Allergy and Immunology Mutch Building 5th Floor 51 North 29th St Phila, Pa. 19104 Phone 215 662 2775 Dr. Richard H Greenberg - (hematologist who is handling the IVIG) Executive Mews Office Complex 1930 E. Route 70, Suite V-107 Cherry Hill, NJ 08003 Phone: (856) 424-3311 Fax: (856) 424-5634 rhgreenberg@centerforcancer.com If you have any other questions, please do not hesitate to contact me via email. glhutt@verizon.net Thanks Glenn

Glenn, thank you for the information. I will contact those doctors and see if they take my insurance. I hope you are doing well. If I am accepted into the NIH study, I will go. They should be contacted me soon. Mary Eileen

I am also seeing a doctor at the Univ of Pennsylvania. His contact information is: Dr. David Larosa Penn Presbyterian Medical Center 51 N. 39th St Mutch Bldg, 5th Floor Philadelphia, PA 19104 215-662-2775 david.larosa@uphs.upenn.edu

Thank you very much for sharing this information with me. Mary Eileen

Both Dr. Soule and Dr. Larosa are in the same location. I called, and was told by the receptionist and nurse that they do not treat SCLS. They spoke with the Head Dr, and he suggested I see a Rheumaologist or Hematologist. I've alread seen all the 'ologists there are in the past 12 years. I called back and tried to pursuade them to please speak directly to Dr. Soule or Larosa and ask if they would see me. Those doctors aren't available today, but maybe someone will call back. It is so frustrating to hit another roadblock. I sure hope that I am accepted into the NIH study so that I can get on the right path. Thank you for the information, and if you have any further suggestions, I would welcome them. Mary Eileen update: 5/18/11. Still no return call from Penn, and no word yet from NIH. Mary Eileen

I was not accepted into the NIH study, but did finally see Dr. Soule. He ordered extensive lab tests, and I don't have the results yet. Thank you very much for helping me find Dr. Sould. Eileen