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Progressive Systemic sclerosis - doctor in Germany?

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#1 smile4you2015



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Posted 19 November 2015 - 05:54 AM



I am from Bulgaria and I have a diagnosis of Sjogren's Syndrome (pSS).


I would like to have an appointment with a doctor who is really a specialist with this disease. There are about 100 people with pSS and the doctors have not so wide experience and they have not got lots of patients).


I read about Prof. Dr. Gabriela Riemekasten and I had to go in Berlin. Unfortunately she has moved to an other hospital in other town. (it was easier to fly from Sofia, Bulgaria to Berlin, Germany)


Please tell me your opinion concerning this question.

#2 Joelf


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Posted 19 November 2015 - 10:51 AM

Hi Smile4you2015,


Welcome to these forums!


I'm sorry to hear that you're suffering with Sjogren's Syndrome and I've included a link to our medical page, to give you some more information.


I'm afraid there doesn't seem to be any Scleroderma specialists in Bulgaria; however I've included links to SCTC Scleroderma Centers and EUSTAR Scleroderma Centers which I hope you'll find helpful. The lists do give details of scleroderma experts in Europe.


Kind regards,

Jo Frowde
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#3 miocean


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Posted 19 November 2015 - 04:50 PM

My advice would be to go to the best doctor for Sjogren's Syndrome you can, even if it means traveling a distance. Usually you do not have to see the specialist more than a few times a year, and if they communicate well with you and your local doctor you will have the best team working with you.


Best wishes to you,



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#4 Shelley Ensz

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Posted 20 November 2015 - 10:10 AM

Hi Smileforyou,


Welcome to Sclero Forums.  I'm sorry you have Sjogren's and send my best wishes to you.  As it happens, Sjogren's is the third most common rheumatic disease, so it is often encountered and treated by the usual rheumatologists.


If you are developing more difficult or complex symptoms of Sjogren's, then it may be most helpful to go to the largest medical university center in your area (the hospitals where they train doctors).  Such centers are likely to see more patients, and more patients with complex conditions as well.


Another tip is to see a listed scleroderma expert, because they are also rheumatologists, and because Sjogren's frequently occurs along with scleroderma, so they are more likely to be well versed in it than the "average" rheumatologist.


I'd like to point out that we serve those with scleroderma and related illnesses or symptoms, worldwide -- including Sjogren's. So we are a great support resource for you for the long term.



Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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#5 smile4you2015



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Posted 22 November 2015 - 07:30 AM

Thank you very much for your opinions. Actually my diagnosis is Progressive systemic sclerosis, as the name of this topic. 


Actually for me the  Sjogren's Syndrome is unknown and I haven't got it.


I prefer to know the opinion of someone who visits concrete doctor. 


I chose Germany because I decided that there will be good doctor. 


Nevertheless I am thankful for your attention ... I will keep to read in this forum because I want to know more for the disease and want to discuss this with other members.