Monday, June 16, 2014

Show Me The List: Sjogren's Syndrome Centers



I received an email a few days ago in which the writer told me that her ENT doctor strongly suspected that she had Sjogren's syndrome. She wanted to know how she went about finding a Sjogren's specialist. I sent her my usual response:
A variety of physicians treat patients with Sjogren's, however usually a rheumatologist diagnoses and manages this disease. As a place to begin, I would ask your primary physician or your ENT for a referral to a good rheumatologist that treats Sjogren's Syndrome patients. And how does one find a good rheumatologist? THAT's the big question. I am working with a rheumatologist and I knew he was a keeper when on our first appointment, he sat down and went through everything with me for one whole hour. I've been very satisfied with the care that I have received from my rheumatologist -- AKA Dr. Young Guy on my blog -- and haven't felt the need to look for care elsewhere. 
But also added this:
I do know of some Sjogren's Syndrome specific clinics located on the East coast: Johns Hopkins Jerome L. Greene Sjogren's Syndrome Center, website here., University of Pennsylvania Health System Sjogren's Syndrome Center in Philadelphia, website here. Massachusetts General has a Sjogren's program, website here
Then there's the  Baylor College of Medicine Sjogren's Syndrome Clinic in Houston, Texas, website here.  
The Sjogren's Syndrome Clinic/UCSF Medical Center, it is located in San Francisco California. The clinic is operated by an oral health physician and an opthamologist. Dr. Ava Wu, the oral health physician, is active with the national Sjogren's Syndrome Foundation and I have read several of her articles published in their newsletter. Website here.  
Check my sidebar for my post which contains a list of physicians who specialize in lung complications in Sjogren's Syndrome; if you need that list let me know. Otherwise, if you are just beginning your diagnosis and treatment journey, I would suggest finding a good local rheumatologist. You may want to join and ask the members of the Sjogren's World Forum for recommendations for rheumatologists in your area. The forum is well moderated and has a large following. I have seen other patients ask for specific physician references and evaluations there. You can find the Sjogren's Forum here
I felt that my response sounded pretty wimpy and I wished that I had an up to date list of Sjogren's Syndrome specific clinics to share with her.

Do you know if such a list exists? If not, I am thinking it may be time to compile one. What do you think? Do you know of this type of listing? Do you have knowledge of another specialty clinic other than the ones that I have listed above?

6 comments:

Tricia said...

I think there is one in Minneapolis, MInn. When I lived in Chicago I was thinking of going there. Now I live in Georgia, and I just got a referral from my primary to go to the one at Johns Hopkins. I want to add my data to everyone else who goes there so that helpfully down the road progress will be made in getting to the cause of Sjogrens and finally the cure!

Julia Oleinik said...

Thanks, Tricia. You're right -- there is a Lupus, Sjogren's Syndrome, and Scleroderma clinic at the University of Minnesota, website here: http://www.umphysicians.org/specialties/arthritis-and-autoimmune-disorders/

Julián said...

Hi there, thank you for compiling this listime. I am interested in the list of physicians who specialize in lung complications in Sjogren's Syndrome for my mother, could you please send it to me to julianrivera994@gmail.com/ also I am particularly savvy with social media and the forum was rather complicated, do you happen to have a list of rheumatologists that treat Sjogren's in the SW Florida area? I truly appreciate your time

Julián said...
This comment has been removed by the author.
Isabel said...

Hello,
I am looking for a rheumatologist and this came up.
I too live in SW Florida. The search is ever more difficult.
My wish for next year is that we have a database with doctors who specialize in Sjogrens.
Thank you for your very informative blog.

Kramer John said...

Please help , my fiance has lived with Sjogren's syndrome diagnosed for the past 10 years we live near Portland Oregon and believe it or not there are no good resources here and if they are we haven't been able to find them can someone please refer us to a specific clinic and or doctor's name contact information she had a child two years ago at the age of 37 and it's been devastatingly hard on her it's come to the point where we go to the doctor all the time for all the little different joint and other injuries thank you and God bless.
remark871@gmail.com

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