Hope the new year is treating everyone well. My fiancé is being transferred to the Houston area next month so off we go on another adventure!  Before I set off calling for a new doctor I thought I would ask if anyone knew of someone in that area. 
 

thank you so much!!

shannon

I don't recall anyone from Houston having co-authored any published articles on SCLS -- which would be ideal.  However, you can write to Dr. Druey at NIH and ask him if he knows any better and can recommend anyone there.

My generic advice is that you look for a compassionate physician, preferably a senior specialist in internal medicine, immunology, or hematology affiliated with a major university hospital, willing to do his/her homework on this rare disorder (namely, read the literature and follow the advice), and willing to consult with the few SCLS experts available on the topic -- like Dr. Druey.

There are several great hospitals in Houston. For example, the University of Texas Health Science Center is such an academic center, and if you go to their website and look up who's who among the faculty in their Department of Internal Medicine, https://med.uth.edu/internalmedicine/faculty/, you can check out the physicians listed and see who might be a good fit because of what they specialize in (e.g., immune or vascular diseases).

Relevant examples I would consider are https://med.uth.edu/internalmedicine/faculty/rodeo-abrencillo-md/, https://med.uth.edu/internalmedicine/faculty/shervin-assassi-md-ms/, https://med.uth.edu/internalmedicine/faculty/akinsansoye-k-dosekun-bs-mbbs/, or https://med.uth.edu/internalmedicine/faculty/john-d-reveille-md/

At my first encounter, I would hand them a printout of key articles on SCLS found here under Disorder Resources, such as: https://www.jaci-inpractice.org/article/S2213-2198(17)30546-9/fulltext, https://journals.lww.com/ccmjournal/Abstract/2017/07000/The_Clinical_Picture_of_Severe_Systemic.15.aspx and https://www.amjmed.com/action/showPdf?pii=S0002-9343%2817%2930602-2  If you can't access them, let me know via email and I'll email them to you.

Aporzeca....

Thank you for your help with the Doctor referrals. I really appreciate it. You have always been a wealth of resources to me through the years. I tried to send you a private message prior to going to the doctor but it apparently did not go through. I see him again this week. I would loove to take you up on your offer to have you forward the articles to my email (Shannoncdowell AT gmail DOT com) . Thank you so much 

 

I have a question for you wondering if you have run in to anyone or heard of anyone else having this issue. I am extremely anemic.  Before leaving Florida I was being worked up to find a reason for this. As this has gone on for years it is nothing for me to hover a H&H around 8-9/28  iron levels low , rdw low etc, in any case when I do go into a SCLS crisis event my h&h will go to a whopping 14/37 which may look normal but is "really high" for me clinically for me. When in reality it isn't high by any standards.

 

thanks for the feedback shannon

trying to get used to Houston but good God oh mighty the traffic is horrible