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Venus Williams Opens Up about Living with Sjogren's

 

Learning what your new “normal” is when living with Sjögren’s can be a very difficult but an important process.  Take a tip from Venus Williams about understanding what your body needs and never giving up.

describe the imageA year after carrying the Olympic torch through the streets of London on World Sjögren’s Day, July 23, Venus once again stood up for all patients by appearing on Katie Couric’s daytime TV show "Katie" yesterday and discussed how she’s had to adjust her life in order to effectively manage her symptoms.  When talking about her recent withdrawal from Wimbledon due to injury, Venus said “I have to be careful of how much I do now” and explained that it takes her more time to recover and that’s something she has to be ok with.

Early diagnosis and treatment are important for preventing complications with Sjögren’s. Unfortunately, reaching a diagnosis is often difficult and has been found to take an average of over 4.7, which is why in 2012 the SSF launched a 5-Year Breakthrough Goal:

“To shorten the time to diagnose Sjogren’s by 50% in 5 years!”

 Venus opened up to Katie about her struggle with being diagnosed saying, "When you’re so tired it’s hard to explain but the quality of your life goes down. I’d go to the doctor and say I don’t feel good and they didn’t know why.”

After enthusiastically shooting down rumors about retiring, Venus added that she sees the present as her chance to get better and finally understand why she didn’t feel well before being diagnosed.  Venus shows her courage by sharing her story as a way to help other patients. That is why the Foundation is thrilled to have her as the Honorary Chairperson of our Carroll Petrie Foundation Sjögren’s Awareness Ambassador Program.

We hope Venus inspires you to talk more about Sjögren’s in your life and take control of your health by joining as an SSF member to receive our monthly educational newsletter The Moisture Seekers and add your voice to our fight against Sjögren’s.  Help us change the face of Sjögren’s and help all patients receive the care needed! 

 

Click Here to Become an SSF Member

Comments

Sjogrens needs all the publicity we can get to make the public aware of symptoms, complaints and diagnosis. Empathy would be really helpful all the way along. It is very frustrating when family does not have the patience to become knowledgable. Go Venus! 
Posted @ Friday, July 12, 2013 12:49 PM by Nancy Kelleher
I have Sjogren's and am having a hard time finding out what I need to be doing, what I need to keep an eye on, etc. There is not a lot of information out there and my doctors never tests me for anything. What is Sjogren's all about is what I would like to know!
Posted @ Friday, July 12, 2013 12:50 PM by Gail
Gail,  
If you have an email address I would love to be your Sjogren's buddy to talk things over with. I was diagnosed a couple years ago and it has affected my lungs along with other symptoms. 
Kris 
Posted @ Friday, July 12, 2013 1:02 PM by Kris
I've had sjogren's for about 11 years - developed dry skin, then dry eyes, mouth and ears after going off HRT therapy - I went into early menopause at 40. In my case, I totally believe something hormonal happened with me. My big problem is I have only $1,000 in dental insurance and I do realize a lot of people don't even have any dental insurance but most of my teeth issues are related to sjogren's - I feel it should be covered by medical insurance. I also agree with Gail - a lot of doctors do NOT take this serious enough.
Posted @ Friday, July 12, 2013 1:05 PM by Eileen
I was diagnosed w/Lupus 8 yrs ago, but not w/Sjogrens till 8 months ago. Initially, Sjogrens was debilitating. There's lots of misconceptions about what it is, and its effects. The more education and awareness the better for everyone.
Posted @ Friday, July 12, 2013 1:13 PM by J Butler
I have had Sjogrens for a while now. It is sad that my family does not support me. My lungs are now really bothering me I am having problems breathing, my legs are bad, I know have Chrones Disease also. Please take the time and learn to rest and relax more.
Posted @ Friday, July 12, 2013 1:30 PM by marioin
Recently my doctor of 21 years retired. A few months before he diagnosed me with Sjogrens without a lot of information. My new doctor hasn't even mentioned to me anything about it and when I asked if I have it he said "your numbers are not blarring, it doesn't really send up any flares" What does that mean? I definately have all the symptoms. The biggest thing my new doctor is concerned about is my very low level of vitamin d, for which I'm on another round of 50,000 units for six weeks. So uniformed!
Posted @ Friday, July 12, 2013 1:54 PM by Susan
I have sjogrens/ski9n lupus and was treated with hydroxicloraquin for one and one/hafe years and one mo ago I stoped the drug,anyone having stopped or are still on it would appreciate a comment. thanks
Posted @ Friday, July 12, 2013 2:09 PM by delores
Would love to share with anyone out there. 
Mine begin 30 years PMR, then Sjogrens and fibromyalisa. 
Once you get one autoimmune you can get more. 
It has attack my kidneys, and lungs. I do have a wonderful rheumatologist.
Posted @ Friday, July 12, 2013 2:09 PM by Beverly A. Erickson
Beverly E. 
 
You or anyone else who would like to discuss symptoms and lend support can email me at davidkris@wmtel.net. I have had Sjogren's for a couple years. 
 
Kris
Posted @ Friday, July 12, 2013 2:12 PM by Kris
19 yrs of Sjogrens and I was a fitness nut. I'm glad she is coming out and explaining this disease to average folks. It's horrendous and once it starts on organs and joints its worse than that. As a guy even worse. Went undiagnosed for 10-12 yrs. Scary stuff to say the least even while being treated for it.
Posted @ Friday, July 12, 2013 3:41 PM by Thomas V
I agree with Eileen. I also have had many problems with my mouth and teth. This year alone I have paid out of pocket expense of over $4000.00 after my dental insurance. I feel that our medical insurance should be able to be used also. 
Posted @ Friday, July 12, 2013 4:10 PM by Kathy Doran
Help? No one understands how SS affects the total life of a person and limits what we can do. Medications do not seem to help and various health aspects get worse. Is there any relief????
Posted @ Friday, July 12, 2013 4:17 PM by Gale Sitton
I was fortunate that my Sjogrens diagnosidps was made within two months of when my routine blood tests showed I had something wrong. My Internist referred me to an Oncologist who did multiple tests, then referred me to a Rhumatologist who did an ANA test which proved I have Sjogrens. My major symptom is severally dry eyes. I have to get my rest and pace myself as far as activities are concerned.
Posted @ Friday, July 12, 2013 4:25 PM by Dottie King
I had remaining 16 teeth removed a year ago March after dentures had been made. I have 3 implants on the bottom for denture to hook on. I am pain free after 30 plus years. I took out 2 loans that were 12 month interest free as Oral Surgeon used different company than prodontist. I got 5 opinions between dentists and oral surgeons...prices and ideas differed but it was worth every minute as I picked the closest, gentlest man whose oral surgeon was one floor up so they could coordinate the day of surgery. Do not hesitate to say good bye to the abscesses and root canals. I have been on plaquenil and evoxac for 15 yrs if evoxac has been out that long. I started with discoid lupus before diagnosed with CREST scleraderma (Raynauds, sjogrens, tanglia, fibro, connective tissue disease etc.). I have been hospitalized with pneumonia with half of my diaphragm still frozen. My biggest problem is IBS which I have had for 40 yrs and deal with almost daily. The Sjogrens Syndrome site and their Moisture Seekers publication are most helpful. Leave the Moisture Seekers out for family to read. I went to one meeting in NYC with my son. When we went in he thought it was all in my head. As people spoke he said Mom, why aren't you a leading advocate in this? DUH! When I see the ads on tv for chronic eye pain, I wonder how many are misdiagnosed there?
Posted @ Friday, July 12, 2013 4:30 PM by Nancy Kelleher
I was diagnosed about 3 years ago and was told I probably had it for 15 years before the diagnosis. I found a "clean" diet is VERY important to maintain feeling good. I changed my diet to no dairy or wheat and lots of fruit and veggies. The difference in how I feel is amazing.
Posted @ Friday, July 12, 2013 4:32 PM by Nancy D
So well expressed about the effects of doing one thing too many, and sometimes you don't know it was too much until the next few days, but we all have to learn to manage our energy in new ways and our families have to understand why we say no, we can't do that. We can't push ourselves beyond our limits anymore without heavy consequences. Trying to work and balance family and the stresses of life in general are difficult with limited energies. I was diagnosed a few years ago and am 60 now but I can look back to my mid twenties and see where I started having symptoms that were probably early sjogren's. I am on Plaquenil and not sure it does much but if it is protecting my organs, I wouldn't know it so I'd rather keep taking it than stop. I'm so glad Venus is talking about Sjogren's because even some doctors don't think of it as more than just dry eyes and mouth so education is much needed.
Posted @ Friday, July 12, 2013 4:54 PM by Lynn Murphy
I was diagnosed in 2007 and it just seems to be getting worse. I have a lot of digestive problems. My teeth have become horrible and I don't have the money to have them fixed. So this is an embarrassing issue whenever I go out. People look at you like you are a horrible person.  
I recently moved to AZ and have no Health Insurance so just trying to survive day by day. I do talk about my Sjogrens but people don't really care because I look normal on the outside. Once I get insurance if any of you know of a good doctor in the Gilbert, Mesa area I would really appreciate it. Also if there is a support group in the area I would be interested in joining.
Posted @ Friday, July 12, 2013 5:10 PM by Mary
VERY INFORMATIONAL
Posted @ Friday, July 12, 2013 7:27 PM by BARBARA P
I was diagnosed a few years ago, dry eyes, mouth, bad teeth, etc. I also have a rare vascular disease called Fibromuscular Dysplasia. They think we also have connective tissue problems, IBS, scoliosis, etc. Anyone else with these?
Posted @ Friday, July 12, 2013 8:44 PM by Ronni Herrick
I have had Sjogrens for as long as I can remember but was only diagnosed 4 years ago. For everyone having trouble with teeth see if there is a dental school near you. They will work on your teeth for a very low fee that can sometimes be financed. I had all my teeth pulled about 15 years ago and it was the best thing I ever did!!
Posted @ Friday, July 12, 2013 9:38 PM by Beki
I wish Venus Williams would talk about the treatment she is getting. Just what is making her feel better? I also wish her interviews would mention "Sjogren's Syndrome" by name instead of "an autoimmune disease." I have had Sjogren's for about 20 years, but my allergist said I had the "profile" for Sjogren's but not the disease itself. Finally I've had the ANA test, which came back positive. My symptoms are severe dry eye, dry mouth, and continuous fatigue. I keep waiting for a treatment that would cut down the fatigue. I've tried Evoxac and Sanigel, but they both gave me heart palpitations, so I was advised to stop.
Posted @ Friday, July 12, 2013 10:46 PM by Barbara Dinerman
I wish I could afford to join as an SSF member, but all my money is tied up in co-pays for all the specialists I have to see and all the meds I have to take....this is just a nightmare. I have Lupus and Sjogren's Syndrome and there are days when I feel like I am getting ready to die.....Thank you to everyone who is contributing...if I win my disability case I will join...right now I just have no money....Thank you for this uplifting message!!
Posted @ Friday, July 12, 2013 10:56 PM by Shelley
I take Evoxac and it helps a lot with dry mouth. Restasis helps the dry eyes. I have a lot of pain and extreme fatigue. Looking back , I had symptoms iduring college days, terrible during pregnancy, and severe after hysterectomy. Retired from teaching early and on disability. 25 years of knowing that I couldn't keep up with other people and always working hard to barely maintain. We are often thought to be hypochondriacs. I also have Chronic Migraine which is also disabling. Thank goodness for depression meds. I would like to hear from anyone who has a Sjorgrens Specialist. Anyone from Alabama?
Posted @ Friday, July 12, 2013 11:01 PM by Judith H
To find a smart+well informed MD in this Very-complicated issue(Autoimmune Dis.) is hard but Assential!+ Many of the Meds. (Prednison, Plaquenil etc)can cause more harm then healing when taken for a long time. Dont obay blindly+Automaticly (Doctors are  
NOT GODS!).Personaly, I prefer the 
Alternative ways - Diet, Exercises...Rest.
Posted @ Friday, July 12, 2013 11:32 PM by JUD SH
To the woman asking about plaquenil. I'm not sure why you stopped, but be prepared to start hurting again even if you don't think it was helping. Plaq is a disease modifying agent, it is important to stay on it. Unless you get a very rare side effect in the eyes, which you get checked for every year, please reconsider it . 
 
Posted @ Saturday, July 13, 2013 3:03 AM by Karen
To the woman asking about plaquenil. I'm not sure why you stopped, but be prepared to start hurting again even if you don't think it was helping. Plaq is a disease modifying agent, it is important to stay on it. Unless you get a very rare side effect in the eyes, which you get checked for every year, please reconsider it . 
 
Posted @ Saturday, July 13, 2013 3:04 AM by Karen
To Karen. 
Autoimmue Dis. has many-many "colors". Its not black+white "story". Side-effects are Not rare when it effect YOU. 
There is a statistic-reason why they are metioned, and the indevidual reaction is differant. (But that is probably your Healthy MD routine-recitation, or you represent the Plaquenil drugs compay..). Between The Permanent!(potential) Vison damage and other symptoms, I prefer the last. By-the-way, a Strict!! Antinflamatory Diet=a lot of fruits and vegetables, really Help with making it easier (and if you can skip dairy and wheat, it is even better. Personal experiance...try it for 2 weeks, Good luck!). 
*Please Dont send responses to my email. Thanks.
Posted @ Saturday, July 13, 2013 9:26 AM by JUD SH
Hi and welcome to my world. I developed Sjogren's when I was just finishing Nursing School. I had to have surgery for a parotoid gland tumor and was diagnosed then. I was 44 yrs. old. It didn't bother me that much for quite a few yrs, then I began to notice I was having trouble charting. I couldn't see well. I went to the Dr. and he said my cornea's were hard to even see they were so dry. He put me on a certain eye drop that I stayed on for yrs. I also notice my dry mouth. I went on for a few more yrs. then noticed my joints were swelling and turning red then would disappear the next day. This went on for a few yrs. In the nineties I developed pneumonia twice and was diagnosed with Fibrosis of the lungs. I've had nothing but trouble in the last yrs. I'm retired and trying to enjoy the rest of my life as much as possible. I do have Neuropathy and my liver has been damaged which goes along with this sneeky disease. I am on O2 at night for my shortness of breath but I'm living!!!!!! and I don't have cancer!!!!!! So at 75 that's pretty good!! Don't give up, stay in there and fight. Live, Live, Live.
Posted @ Saturday, July 13, 2013 10:02 AM by Patsy Shepherd
Judith H. I live in Alabama. Please message me @ sewcrazy09@gmail.com if you would like names of doctors. I keep reading about the importance of diet. I am going to try it for a couple of weeks.
Posted @ Saturday, July 13, 2013 10:03 AM by Debbie
Will try the diet fruits and veggies  
dairy and wheat will be hard but am going to try. Have great doctor's they are several i see now. Was diagnosis 6 years ago my joints hurt and having a hard time walking now. Stopped taking plaquenil but will resume taking it. You can e-mail if you like am also on Facebook too. 
Virginia
Posted @ Saturday, July 13, 2013 3:26 PM by Virginia
 
 
 
 
 
 
 
I have joined this Blog with the hope of learning new+useful  
"Tips" that will help me managing my Sjogren s. symptoms. 
I don't really want to hear more of the familiar "Doom/Gloom" 
stories tipical to our disease (And Autoimmune Dis.en general...). 
We all have our personal "Via-de-la-Rosa" History, until the Dx. - and after. 
Its not useful (My opinion), and a waste of energy in this Complicated journey to achieve The Best Quality-of-Life possible for us.  
So, Ill add my Tips, with the hope of helping somebody else. 
I am not a Doctor! Only RN for 33 years, and those are some of my conclusions from my Trail+Error journy. 
Beside the Anti-inflammatory Diet, its Very important to Move!!  
Despite, and with the frequent-pains and limitations.  
Slowly, in your own pace (I am doing every morning Stretching-exercises on the Hudson-Park rails...). If possible do some Physical-therapy, Strength+Balance exercises. (I didn't know that SJ has a Neuro. component until it effected me - Dizziness spells etc.). 
Swimming - is "Compassionate" to painful joints...En short, we have to move in order to Survive, to Live, (Even if all we crave is to lie in bed and pity ourself...). Rest! 30 minutes to "cut" the day, will change your whole Energy picture for the rest of the evening. 
Know your ###. I mean, your Blood-Tests results (en general). 
You don't have to be a Doctor for this, but take Some Responsibility 
and control on your Health. (After one-two times, its became 
simple and familiar). Enjoy the Music!! or anything else that you love. Good for the Body-and-Soul (STRESS, is Very Negative!! for SJ...). 
And to End this long post,(Sorry!) I am strongly recommend the lecture of Dr. Terry Wahls  
on YOU-TUBE - "Minding your Mitochondria". 
As many of the Autoimmune Dis. belong to the "same family" and have very similar symptoms - its worth watching+learning. 
Good-Luck and Good-Night! JUD SH  
 
 
 
Posted @ Sunday, July 14, 2013 12:03 AM by JUD SH
JUD SH - I'm sorry you feel that hearing other people's stories is a waste of energy, doom and gloom, I personally have found it helpful to hear that others have, or are having, the same symptoms/experiences that I am. I also think it is a little therapeutic for people to tell their "stories" to others that are in the same boat and can sympathize with them. I do agree that sometimes it can be a little too much and can really get a person down reading about all the bad stuff that can happen with this disease but if it gets to be too much, I just quit reading.  
I also joined the Sjogren's World Forums. There are MANY people that post there so you might find some more helpful tips there. Again, there is a lot of doom and gloom there as well... I think it kind of goes with the territory, don't you?  
Also, I have read that many people are changing their diets using either the anti-inflammatory or even gluten free diets and getting good results. Although, I think diet change might take longer than a couple weeks to see any signs of whether it is helping or not. 
And I completely agree with you about keeping your body moving and keeping records of your blood tests (I keep ALL medical records)! We all need to keep "trying" to get exercise, it is vital! I am finding that just about any exercise I do is causing me pain, inflammation, bursitis, tendonitis, etc. I need to try water aerobics or swimming (I'm not a good swimmer) but just haven't done it yet. I also hear yoga helps in many ways. It is just hard to keep moving when you have an injury and are leery it will happen again! 
I have learned the hard way that it is VERY important to keep good medical records! I have been dealing with my medical issues since at least 2002 and have seen several different docs... you wouldn't believe how many records have been lost or the doc just plain refuses to release them, actually told me they didn't exist! 
Anyway I plan to watch your recommended YouTube lecture by Dr, Terry Wahls. Good luck - Lisa
Posted @ Thursday, July 18, 2013 9:45 AM by Lisa Welch
All experiences and tips for survival are useful to somebody. We are all at different places in our "journey". I struggled with the symptoms for years and years, with no diagnosis. Even after a Dr at Mayo told me that my dry eyes condition was a "red flag" for an autoimmune disease, I remained in the dark. Tests results did not strongly indicate SS. Curious as it sounds, I actually identified my problem from a case on "Mystery Diagnosis". The person had more drastic symptoms than I had at the time, but I saw some of myself in her. A few years later, as my dry eyes became more of a problem, I discussed it with my opthomologist. She put me on Restasis and recommended that I see a rhumetologist. Continuing on my quest for answers and relief, I followed up with her referral........still negative blood work, but I was put on Evaxac to increase moisture production. Big help! My point is that doctors do not always do the lip biopsy which gives the definitive diagnosis. In my case, I sort of "went through the back door" with suggestions and a trial prescription of Evaxac.. If you wait for undeniable test results, you may never get help. Now I am learning more from fellow sufferers than I have ever learned from the medical profession. SS is often regarded simply as dry mouth, rather than the complex syndrome that it is. For the future, I need all the information that anyone can share, and I hope that my experiences will help someone.
Posted @ Thursday, July 18, 2013 1:58 PM by Judith H
Thanks!!! Lisa and Judith H. 
I may have been a little harsh (Lisa), with the term "wast of energy". Sorry! 
I like both your responses. 
By-the-way Lisa, I am vegetarian 
since childhood but in the last  
3-4 years added gluten and dairy, 
(Having persistant Pleuritis). 
I feel that this Diet The Antinflamatory, reduced-aliminated my Arthritis attacks (Tfu!-Tfu!!)and I am gratful for it. 
2 weeks is enough time to check if you are able to maintain this Diet and also to see some improvement. 
On the next Post that I get to my  
Face Book, "Recently Diagnosed with Sjogres", has a Very(!!) Good Video with more pts. interesting stories. 
And my Tipe for Dry-eye that helped me....Good Luck! JS 
*To be able to go back to a previous Post - I Save it with my Favories. 
 
 
Posted @ Thursday, July 18, 2013 2:52 PM by JUD SH
Someone mentioned "once it starts on the organs and joints". Can someone enlighten me about the possibilities? Also, steps in identifying organ damage and possible action to avoid complications. Is it all about having the right physician?
Posted @ Thursday, July 18, 2013 11:45 PM by Judith H
JUD SH you mentioned a Facebook "Recently Diagnosed with Sjogres" but I can't find it? Are you talking about the video here on the Sjogren's Foundation Website or do you have a Facebook page you are referring to? I would like to watch the video. I have watched the video on this Website it was helpful. 
If you can actually see results in just two weeks of following an anti-inflammatory diet then it might just make it easier to try! haha I hate dieting and there are SO many foods that I LOVE that I will have to give up that it just makes it hard to stick to it!  
Posted @ Friday, July 19, 2013 7:45 AM by Lisa Welch
Judith H - I was told the lip biopsy would give me a definite diagnosis so I agreed to do it. It was positive for Sjogren's but my Rheumatologist was STILL hesitant to diagnose it as Sjogren's because my labs are mostly negative with a low positive SSA/RO, my eyes aren't super dry and neither is my mouth (at least not dry enough for her) haha Go figure!!  
She diagnosed it as "Probable" Sjogren's and put me back on Plaquenil.  
I was on Plaquenil once before but I quit taking it when the Rheumy I had then left the area.  
I bought the book recommended by this Foundation - The Sjogren's Book - I have found it to be really helpful! You will find a lot of info in this book regarding just about every aspect of the disease as well as how it can affect internal organs. I also joined Sjogren's World Forums - there are a LOT of people that post comments, suggestions, questions, tips, etc. I have found that site to be helpful as well.  
The problem with any of this is that we are all different so what is good for one might not work for others as well as, what happens to me might not happen to you or maybe not to the same degree. Plus so many have multiple diseases/problems so it's hard to say it is def Sjogren's causing it. 
I do think finding a good doc is key... one that will listen and be open minded!  
I suddenly (over the last year) have been diagnosed with Osteoarthritis, degenerative disc disease, and some other arthritis related affliction to my right knee and leg, yet my Rheumy doesn't think it's Sjogren's related?! She blames it on AGE... I'm close to 50 but not quite there yet so I have a hard time with that one! :) 
I hope this helps! 
Posted @ Friday, July 19, 2013 8:14 AM by Lisa Welch
To Lisa.  
It is Not the video with Venus. 
The other one is from May 2012.  
"Sjogren s syndrom: 
A place to begin". In the "Sjogrens Synd.foundation" site. ("Conquering Sjogrens:Follow us..." etc) 
With a (Lady)Doctor conversation+ 
explanation. (I mantioned the title of the Post). Concerning Osteoarthritis. When your Immune system is compromised, you are suseptible to all kind of degenerativ dis. And it can start at Any age. 2 weeks is ONLY the beginning, and I really miss cheese-cake...We have to choose our priorities.
Posted @ Friday, July 19, 2013 9:58 AM by JUD SH
I've been diagnosed with Sjogrens for 3 years but, I know I've had it around 10 years. Constant thirst, dry skin, dry eyes....I'm gonna look for that book that Lisa suggested.
Posted @ Friday, July 26, 2013 6:32 PM by Kellie
In the NEW YORKER  
(8/26/2013 - this week). 
There is a wonderful(!!)article 
personal History 
WHAT"S WRONG WITH ME? 
(I had an autoimmune diseas. Then 
the disease had me). 
Posted @ Thursday, August 22, 2013 8:40 PM by JUD SH
I also have been diagnosed for 6 years and have yet found a doctor who seems interested in this disease. In the past 5 years I have had major dental problems, but also can't afford to have the work done. I have lung problems, vascular problems, and digestive problems. Lately I feel that I am having trouble with my liver. I have really enjoyed everyones' stories and hope to see if anyone can give me some advice on how to find the right doctor. I am living in Arizona and thought the warm weather would be better for my breathing but it is worse. would appreciate anyone who would like to be in a group.
Posted @ Thursday, August 22, 2013 11:16 PM by Mary V.
I just discovered that my 12 year old tested positive for sjogrens disease. Does anyone have someone in their family that has sjogrens, I am just learning about the disease and at this point it is effecting her knees and now her saliva glands in her mouth.
Posted @ Friday, September 20, 2013 10:51 AM by msauer
msauer ~  
I'm sorry to hear that your daughter has Sjogren's and at such a young age! There is a lot of helpful information here on the Sjogren's Foundation Website, and I suggest you start with the video a place to begin, and the family & friends information page. The book they recommend, The Sjogren's Book, is full of helpful information too.  
Also, if you have Facebook there are a lot of support groups for Sjogren's most of which are private so other people on Facebook can't see what members are saying. Just search Sjogren's and you should be able to find them. 
Good luck to both of you! Lisa
Posted @ Saturday, September 21, 2013 7:38 AM by Lisa Welch
msauer, 
A 29 yo daughter started having swollen joints, raynaud's, etc and was tested for ra, etc. We were stunned with the possible ra diagnosis because there is no history of ra. After going through the family health history, I remembered one of my mother's sisters (and she had many) had a cornea transplant. I've experienced severe dry eyes for some time and so has my 21 year old daughter. She went to the ophthalmologist a few days ago and has a rough cornea and is receiving treatment. She was asked if there is ra in the family. That's when I began to think that Sjogren's may be ultimately responsible. There has to be a connection here but ours seems to be glandular and possibly the oldest daughter is extraglandular. She sees a rheumatologist in a few weeks, and hopefully, some insight.
Posted @ Tuesday, September 24, 2013 2:12 PM by sueinmi
HI MARY V. 
I also live in phoenix, and am looking for a good doctor. I'm going to have my regular doctor refer me. 
Will let you know what I find out. 
Pat Wendeln
Posted @ Wednesday, October 23, 2013 3:24 PM by Patty Wendeln
I have had blood clots,graves ,thyroid surgery,salvary gland surgery(22tumors removed)and other surgeries,and now I have sjogrens skin lupus raand I am trying to set up a support group as I went to one in Sarasote and found it to be very helpful D
Posted @ Wednesday, October 23, 2013 4:02 PM by dee Fark
I live in Auburn,Wa. I would like to be in touch with other Sjogren's patients in my area. I find this desease to be quite isolating. People even doctors don't really understand it or how frustrating it can be.
Posted @ Thursday, November 07, 2013 4:37 PM by Rose Dethloff
Hi all, I loved reading all the posts. I got diagnosed 8-9 years ago, but for sure I had it longer than that. My problems were my eyes, very dry, so my eye dr. run a blood test and referred me to a specialist. I'm on Plaquenil for 7 years I think, but I don't know if should keep taking it or not. Besides dry eyes ( I have plugs into my upper and lower tear ducts, keeps my eyes moist, I learned to cope with that ), bad teeth ( all my life), lots of money spent on dental. These two are my symptoms and blood test that shows that I have Sjogrens. I eat pretty healthy and I exercise a lot. I am a personal trainer and I love fitness. Someone mentioned above the importance of exercising. And it's true. I learned to swim at 43, last year, I kickbox, box, run, yoga, take classes at the gym and I think the more I do it the better I feel. I feel better than in my 20s. One dr told me once that he can't treat the lab tests. Many dentists that I went they didn't even know about this syndrome. And they should. Keep moving my friends.
Posted @ Wednesday, March 26, 2014 3:58 PM by Lucica
I've had Sjogrens for 2 years. It has effected my tastes buds, dry eyes, dry mouth and recently more dryness inside cheeks and my tongue feels like I burned it. Things are changing for the worse. I have 3 trips to take this summer and have made airline reservations..2 possibly in August and one in October. I'm nervous that I won't be able to travel if I get worse. I'm suppose to babysit my grandchildren in one of the trips. Any suggestions on how to eat. I was just getting into a routine, then the tongue started burning. It's such a chore to eat.
Posted @ Tuesday, June 24, 2014 10:30 PM by Betsy S.
Take some advice from the author of "The Inflammation Syndrome". Do not eat anything that doesn't look like it did while in nature". The big four items that promote inflammation are wheat/grain and starches (potatoes, corn, etc), alcohol, eggs and it's products and sugar. Use only olive or coconut oil for cooking and eat lots of salmon/seafood. Chances are that your diet may be leaning toward the bad omega 6 instead of 3. Great books on inflammation and diet include the one listed above, "The Paleo Approach" (in depth coverage of autoimmunity by Sarah Ballantyne)and "Breaking the Vicious Cycle". My 20yo daughter started with Breaking the Vicious Cycle and has not had seizures or gut issues since. Her labs, which were once positive for lupus, ra, anti ccp, etc are now negative. Is it worth a try...YES! Will it work for everyone? I believe everyone can benefit to some degree but one has to be willing to transform your eating habits. A rice (rice is a heavy starch and must never be eaten) steamer creates wonderful vegetables and a cast iron skillet (made in USA) creates it's own non stick pan. While on vacation try to avoid all fast food and stick to Mediterranean type restaurants that do not use cheap high omega 6 vegetable oils. Usually they make all of their own food and it is usually healthy (but watch and choose carefully). Ask questions at the restaurants about their food. If it's fast food it's HIGH in omega 6 which causes LOTS of inflammation. Salad dressings can be filled with omega 6 if coming from a bottle. Make everything yourself! If it comes in a bottle, package or box there are bad things in it. Use only simple dressings with vinegar, oil and perhaps a little honey. All the books can be found at local libraries or can be sent to your library branch from other libraries across the country. Knowledge is power. Chances are that everyone has had this disorder for a long time before diagnosed so give the diet some time to work, as well. See a physician/chiropractor or dietitian who will work with you on supplements who is into natural approaches. A good toothpaste to use is Biotene and can be found at Walgreens or online. It will ease your dry mouth. Most restaurants are now offering fresh fruit and steamed veggies. Just be sure they are pure and not covered in oil or dressing. Good luck and please (if your haven't already) change your diet immediately and read. Keep a diet diary. Watch and write down everything you eat and how you feel. Your body is not digesting foods the way it is supposed to, for some reason, and it leads to autoimmune disease. We found out the hard way but are definitely on the road to recovery. Hippocrates stated..let food be your medicine and let medicine be your food. Hope you recover as well as my daughter has. You have to identify and isolate what is causing the bad chemistry.
Posted @ Wednesday, June 25, 2014 10:51 AM by Sue
Hi my name is Cathy. I would like to know if anyone knows of a support group in the Phoenix AZ. area for Sjogren's?  
If so please email  
me at:azcathy1@hotmail.com. 
Warmest regards, Cathy
Posted @ Tuesday, August 26, 2014 10:47 PM by Cathy
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