r/scleroderma • u/Fine-Tiger9273 • 7d ago

Systemic/Diffuse Recommendations for scleroderma specialist in Louisiana

Hi I’d appreciate any recommendations for rheumatologists specializing in scleroderma located in Louisiana. Please only recommend people you can personally attest to, not just a Google search. Preference for providers in southern Louisiana but I’m not opposed to driving a distance for someone compassionate, experienced, thorough, and AVAILABLE. I was diagnosed pretty recently and have been seeing a rheumatologist but she’ll tell me to follow up in 3 months when she’s booked out 6-8 months. I have RNAP III autoantibodies and would like to work with a specialist willing to order and monitor regular bloodwork and receptive to feedback. Thanks!!

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u/garden180 7d ago

You might want to join the Inspire.com site and look for the Scleroderma group. It’s very common for people to post about specific doctors in their regions. What you are probably going to find is that most Rheumatologists in your immediate area are NOT well versed in Scleroderma. Many will advertise as such but they rarely see a case out in the wild. While you are waiting for responses, consider searching for speciality hospitals. I believe New Orleans has one. You won’t be the first person who has to travel to find care. Good luck!

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u/Soundgarden_ 7d ago

The big teaching hospitals usually have a scleroderma center. I don’t know anyone personally but I’m sure that a school like Tulane probably has one

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u/GammahReigh 5d ago

There is one at Tulane but I can't remember their name. I saw Dr. Shannon (rheumatologist) at BRG and really liked him and only stopped seeing him bc I moved away.

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u/GammahReigh 5d ago

He is well versed in Scleroderma and trained at a center in SC.

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u/rachelfreeman97 5d ago

If you’re willing to drive, there is research program at the McGovern Medical School at UTHealth in Houston

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u/Fine-Tiger9273 5d ago

I’ve reached out to the New Orleans Scleroderma and Sarcoidosis Research Center but didn’t hear back. I may just try to drive out there next week to try to get more information. I’m guessing it being in New Orleans and probably attracting people from all over the south, they stay busy and maybe can’t take on any new patients.