Hi all!

I am currently recieving my 15th round of infusions as I type this. I was diagnosed in February of 2018. I had back to back winters with SCLS. The first time in 2016 was diagnosed as myocarditis, but the doctors weren’t convinced. Fast forward 13 months and again I was on life support. Luckily one of the fellows at JH had a background in rare diseases. I have a primary care doctor but he is somewhat clueless about what I’ve been through and SCLS. If Marylanders with SCLS can recommend a primary doctor in the DC/Baltimore area please message me. And if anyone wants to talk about their SCLS with someone who’s stared death in the face twice, who is a survivor, please message me.

- Kevin aka Dude

Welcome to our community, Kevin!

The best physician to have on your side is a veteran internist or allergist/immunologist with a teaching and/or research appointment in a medical school -- someone who is competent AND compassionate and not afraid to manage a rare-disease patient. I looked up many of the physicians affiliated with the Frederick Regional Health System in and around Frederick and wasn't impressed by what I saw.

If I were you, I would make an appointment with someone affiliated with the Johns Hopkins School of Medicine in Baltimore who is very senior and, though they may not be a right match for you, they would be able to recommend one or another colleague interested in rare diseases, blood disorders, and immunological issues.  As a first point of contact, I like the profiles of the following Hopkins internal-medicine physicians: Drs. Eric B. Bass, Daniel Ernest Ford, Craig Evan Pollack, or Gregory Paul Prokopowicz, see https://www.hopkinsmedicine.org/gim/clinical/jhoc.html  I also like the profiles of the following Hopkins allergy/immunology physicians: Drs. Antoine Azar and Jody Robert Tversky, see https://www.hopkinsmedicine.org/allergy/interests/  Take information on your medical and hospitalization history with you to the first encounter.

If you haven't done so already, ask your current doctor to send your medical history to, and request a consultation with, Dr. Kirk Druey at NIH/NIAID, so you may visit with him and get his evaluation and best advice. He's the world's leading expert on SCLS, and you are very close to Bethesda, so it would be silly for you not to have him in your corner, as well.  His contact information is on the page Community Details, under Tips or Suggestions.

And please fill out your profile page (https://rareshare.org/profiles/dudescls) with as much detail as possible about your medical history.  We're still learning a lot from one another.

Thank you for your research and input. I have met with Dr. Druey and I am very familiar with Johns Hopkins. It was there that my life was saved twice. SCLS specifically occurs to my heart. I am well known by the cardiologist at Hopkins. I have some of their personal phone numbers and have follow up appointments with them. But they treat me and check in on me as a heart failure patient, making sure my ticker is ticking fine. They’ve never encountered my condition before. You went beyond answering my question and I am very grateful. I will definitely look into the doctors you recommended at Hopkins. I really need to have confidence in the IVIG. Flu season has become the most freightening time of year for me. The cardiologist that have witnessed my SCLS have confidence so I should too. I would like my primary physician to have more knowledge on rare syndromes though. Thank you again so much for getting back to me!!

Hi Kevin. While nothing can be guaranteed in life, as a survivor of 3 major CLS attacks and havining been on IVIG for 8 years with no further attacks or any particular increased risk to community diseases I think you should rest easily. I do also have my annual flu shots of course. Good luck and enjoy your life. BTW I am also supported by a GP with the characteristcs described by Arturo and a Cardiologist, Immunoligist and Hematologist all of whom are deeply aware of my condition and support me fully. I am, I recognise extremely fortunate. The other side of this is that with the IVIG my consultations have become less frequent and my health in general good.