tag:blogger.com,1999:blog-690850457652849477.post8419811045540135554..comments2024-03-19T09:10:47.280-07:00Comments on Reasonably Well: Show Me The List: Sjogren's Syndrome Centers Julia Oleinikhttp://www.blogger.com/profile/04857783768340014545noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-690850457652849477.post-37953095465371952862023-04-18T06:49:45.904-07:002023-04-18T06:49:45.904-07:00Thank you everyone that contributed to this post. ...Thank you everyone that contributed to this post. It is definitely challenging, frustrating and time consuming to be YOUR own advocate in the midst of learning. I was diagnosed in 2008 and Sjogren's has progressivley infiltrated internal organs. From the time of diagnosis to 2023 has been an uphill journey of learning, inadequate care due to lack of knowledge, many visits to specialists, Physicians who DO NO link ailments to Sjogren's. Most of all just a lack of information as to where one can obtain informed care.<br />SO, thank you . . Even Now.<br />Ms. A<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-36768170427266668082020-11-20T05:09:18.091-08:002020-11-20T05:09:18.091-08:00I live near Indianapolis, Indiana. My rheumatologi...I live near Indianapolis, Indiana. My rheumatologist has rudimentary knowledge of sjögrens like so many. <br />I have lung involvement and swelling of the soft tissue which seems to confound her. She wants it only to be on the<br />top side of the joint. I’m exhausted in more ways than one. <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-61766023477415361832019-01-21T13:07:07.325-08:002019-01-21T13:07:07.325-08:00Looking for a good Rheumatologist in NYC... and to...Looking for a good Rheumatologist in NYC... and too sick to travel to other states.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-84547022175267879352018-10-17T19:49:14.431-07:002018-10-17T19:49:14.431-07:00Sjögren center in Palm Beach County in Florida?? Sjögren center in Palm Beach County in Florida?? Laurie Nahumnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-49191680935333650332018-07-31T10:29:33.969-07:002018-07-31T10:29:33.969-07:00Does anyone know of. Sjogrens clinic at Duke?Does anyone know of. Sjogrens clinic at Duke?Anonymoushttps://www.blogger.com/profile/07978026165322844751noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-23755123042960804872018-03-04T05:08:44.345-08:002018-03-04T05:08:44.345-08:00I also have Sjogrens and I need a Doctor in the Ch...I also have Sjogrens and I need a Doctor in the Chicago area. Anybody know a Doctor that specializes in Sjogrens?<br />ThanksDeborahhttps://www.blogger.com/profile/11508721444889884552noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-90258814980451255152018-02-17T13:10:44.276-08:002018-02-17T13:10:44.276-08:00I live in Anchorage, Alaska and would like to know...I live in Anchorage, Alaska and would like to know the closest SS clinic to me. We only have two rheumatologists up here. The wait is horrendous. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-42955916251947460342018-01-23T11:45:00.138-08:002018-01-23T11:45:00.138-08:00Oh, Julia. This post has hit my weakest of weak sp...Oh, Julia. This post has hit my weakest of weak spots, as a Sjögren's support group leader and contact person in the SF Bay Area. The MYTHICAL list of rheumatologists who specialize in Sjögren's is soooo sought after. In our area, it has been even more wished for after Dr Nancy Carteron, a long-time mainstay of the Sjögren's community, retired from active practice. Fortunately, she is still working with the Foundation on their important initiatives.<br />Another member of the Foundation board, who lives in our area -- Janet Church -- is also looking for a new doc, following Dr Carteron's retirement. Janet has a blog -- www.sjogrenslife.com -- on which she has written about her search. <br />In our area we try to help each other out via our support group and similar things. But it is a continuing struggle.Nancy Cnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-4071150144970732662017-11-02T11:24:39.640-07:002017-11-02T11:24:39.640-07:00I am looking for one in Washington stateI am looking for one in Washington stateAnonymoushttps://www.blogger.com/profile/02727274399492475841noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-53462484032155642412017-09-22T12:17:31.160-07:002017-09-22T12:17:31.160-07:00Could Canadian hospitals/clinics be added to this ...Could Canadian hospitals/clinics be added to this list pleaseSandinoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-68763764264495448582017-03-18T14:05:28.268-07:002017-03-18T14:05:28.268-07:00Please help , my fiance has lived with Sjogren'...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. <br />remark871@gmail.comAnonymoushttps://www.blogger.com/profile/01992474556338296278noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-20918651142570798462017-01-05T04:59:53.747-08:002017-01-05T04:59:53.747-08:00thanks
thanks<br />Anonymoushttps://www.blogger.com/profile/04571828795230778384noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-14714958688379438522016-12-28T09:26:30.430-08:002016-12-28T09:26:30.430-08:00Hello,
I am looking for a rheumatologist and this ...Hello,<br />I am looking for a rheumatologist and this came up.<br />I too live in SW Florida. The search is ever more difficult.<br />My wish for next year is that we have a database with doctors who specialize in Sjogrens.<br />Thank you for your very informative blog.<br />Isabelhttps://www.blogger.com/profile/12978719568034001447noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-86575654303609957392016-06-18T12:41:45.703-07:002016-06-18T12:41:45.703-07:00This comment has been removed by the author.Juliánhttps://www.blogger.com/profile/07082926294384417521noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-47674090857444275952016-06-18T12:40:31.830-07:002016-06-18T12:40:31.830-07:00Hi there, thank you for compiling this listime. I ...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 Juliánhttps://www.blogger.com/profile/07082926294384417521noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-67625458495850940512014-06-16T11:48:38.146-07:002014-06-16T11:48:38.146-07:00Thanks, Tricia. You're right -- there is a Lup...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/Julia Oleinikhttps://www.blogger.com/profile/04857783768340014545noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-8439019882458688522014-06-16T07:55:36.109-07:002014-06-16T07:55:36.109-07:00I think there is one in Minneapolis, MInn. When I ...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!Triciahttps://www.blogger.com/profile/02601539669177463755noreply@blogger.com