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Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

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Is Vaseline Safe for Nasal Dryness?

 

WindWith winter weather exacerbating many Sjögren’s symptoms, including nasal dryness, the Sjögren’s Syndrome Foundation has been receiving a lot of questions about the use of Vaseline to relieve the pain associated with dryness of the nose and sinuses. 

Below is a Question & Answer on this topic and how inhaling Vaseline, when used to sooth nasal dryness, can affect the lungs. This was taken from a past SSF National Patient Conference talk "Lung Complications & Sjögren’s," by Richard Meehan, MD, FACP, FACR.

Q. I’ve been putting Vaseline inside my nose. I’ve read recently that the grease can get in your lungs and cause a special type of pneumonia. So, is this something that you shouldn’t put in your nose?

A. Well, our ENT physicians don’t like Vaseline. They recommend that people frequent the use of nasal spray, that puts the normal saline back in the nostril. Some of them like to use a little bit of olive oil, but generally it's thought that Vaseline is toxic to the lungs if you inhale it.

- Dr. Meehan

CD

Lung Complications & Sjögren’s by Dr. Meehan

Chief of Rheumatology and Professor of Medicine at National Jewish Health in Denver, Colorado. Dr. Meehan also is Co-Director of the Autoimmune Lung Center at National Jewish Health and a specialist in autoimmune diseases and rheumatoid conditions affecting the lungs.

Lung complications are sometimes the most misunderstood and life-threatening manifestations of Sjögren’s. Dr. Meehan will add to your understanding of the various pulmonary complications and leave you with knowledge to share with your own physician. The audio is taken directly from a talk given at our National Patient Conference.

Member Price: $16
Non-Member Price: $30
(You must be logged in to to purchase at Member Price. Double check you are receiving the correct price before finalizing your purchase.)

Each talk is 30-40 minutes long, includes the Question & Answer at the end of each talk, and comes with the handouts used by the presenter. 

 

Click Here to Purchase Aduio CD

RESEARCH BREAKTHROUGH: From SSF Grantees

 
Moser 2

The Sjögren’s Syndrome Foundation is excited to share that with the completion of the first genome-wide study of Sjögren’s, six new genes have been identified. Although this is only the very first step in unlocking the mystery of Sjögren’s, this breakthrough gives hope for future researchers to investigate causes, progressions and treatments at the disease’s genetic level.

This research was completed by the Sjögren’s Genetics Network (SGENE) that consists of an international coalition of researches led by scientists at the Oklahoma Medical Research Foundation, OMRF, include two SSF Research Grantees: Dr. Kathy Sivils (Moser), 2011 SSF Research Grant Recipient, and Dr. Christopher Lessard, 2013 SSF Research Grant Recipient.

I can’t begin to explain how much of a difference the SSF grant made to this work. And this is just a milestone in the beginning of our journey to understand the genetic causes of Sjögren’s. I know it’s a long way off, but I hope these discoveries will open the door for researchers to find therapeutics that work at the genetic level to stop the disease,” said Dr. Sivils.

Lessard 2

“This is a first step. Now that we’ve identified these genes, we can dig down and start to understand how these genetic variants alter normal functions of the immune system,” added Dr. Lessard.

This study required 2,000 patients samples that were collected world-wide and tested against 7,000 healthy samples. One of the main difficulties with Sjögren’s research, is collecting the patient samples because there’s not one 100% conclusive test for diagnosing Sjögren’s, which is why the SSF has focused on funding research specifically on novel diagnostics.

It’s because of your generous support that the SSF is able to award grants to talented researchers like Dr. Sivils and Dr. Lessard, who bring novel approaches to Sjögren’s research."I am proud that we were able to provide support for this groundbreaking research and look forward to future Sjögren’s breakthroughs,” said Steven Taylor, SSF CEO.

The SSF is currently focused on many research initiatives including: Research Grants, Clinical Practice Guidelines and our 5-Year Breakthrough GoalWe hope you will consider donating to the SSF Research Program and help us create a future filled with hope for all Sjögren’s patients and their families. 

Donate to Research

***This work appears in the journal Nature Genetics

Tracking Your Symptoms

 

Living with an Invisible Chronic Illness (ICI), like Sjögren’s, can be difficult because you don't look sick. 

tracking your symptoms Image

Tracking your symptoms or keeping a symptoms journal is a great way to "show" your doctor what symptoms you're experiencing, as well as, a great resource to help them recognize any patterns, should they become present. 

Tracking your symptoms is also a great resource if you're filing for Social Security Disability by showing the frequency, severity and duration of your symptoms. 

Click Here for a printable "Tracking Your Symptoms" worksheet.

 

Click Here to Become an SSF Member


Today, This is My Life with Sjogren's... AND I LOVE IT!

 

The following is post from a guest blogger, Richard a male SSF Support Group Leader in Idaho. We asked Richard to write about what he does to successfully cope with Sjögren’s.  

No, not the Sjögren’s, my life silly, and I believe in living it well and fully. I am a Sjogrenite, a father, a friend, a volunteer, master (or slave) to my yellow lab, a Harley rider, a hunter/sport shooter, a country swing dancer, a fisherman, a Vandal (University of Idaho’s mascot), a neighbor and am proud of all of these. But most of all, I’m proud to say that I live my life the way I want to even after having been diagnosed with SS (Sjögren’s Syndrome) 12 years ago. When something challenges me, my thought is "bring it on!" I’ll find a way to meet and, and perhaps, even beat you in a positive way.

So how do you do this when you hurt unbearably some days, wonder when nasty little “occurrences” of a myriad of new symptoms will ever cease, and are just plain tired of SS’s poop? I don’t know how you do it, but here is how I do.

Richard and Mitchell Bliss 3

First of all, I acknowledge that “today is the healthiest I’ll ever be”. Now that is a mental attitude that I must adopt because it is TRUE! However, with that said, how can I make the symptoms and my attitude the best?

I’ve decided that I need to be positive about my disease or I’ll never feel good physically or emotionally. I give myself a 20 minute window to be “pissy” (on the occasion that I have those feelings) about my hurts, issues, lack of energy, lost ability to mentally associate things, lack of full mobility, etc. I don’t like being around folks who are always negative and grouchy, so why would I want to be one of those? So that’s it, I start thinking about the things and people I really enjoy and appreciate, then my time is up! Most importantly, I think “why would I want to waste even a half a day of my life?” The answer is simple, I don’t and I won’t. There are way too few left at this age and if I were younger, I’d still feel that way.

Exercise is a VERY important part of my life. All literature regarding chronic illnesses and/or aging illustrates this point with an explanation of how it helps us immensely. So how do I get around the pain, etc.? I set my alarm for 5:15am three days a week and go to the local YMCA to do a workout in the pool that works on my entire body. The workout is 50 minutes long. Doing exercises in a pool is a lot easier on the joints and muscles. Plus, I treat my aches to 10 minutes in the Jacuzzi when I finish. I really dislike getting up that early most mornings along with the discomfort, okay- pain, but it's not about my likes, it's about my body’s needs and my future. I also do a workout at home 2-3 days a week in between the pool visits. I stretch, use lighter weights, elastic bands and the floor. I do all this not because it feels “good,” but because I know that it helps my body and because I can control my mind, at least in that regard- where it goes some days when I need it most, I have no idea.

I also believe in having fun and laughing. The world and my mind are my playground. I still do most things I did before all the various SS effects came storming my way about 8 years ago. Granted, I don’t do them the same way- I have modified them to fit my capabilities today. And I keep adjusting them year to year as my symptoms change (worsen). That means I still have the joy of participating in them, rather than being sour that I can’t “climb that hill anymore” (literally and metaphorically). I’ve helped my family and friends to understand a bit about these effects of SS so that they can enjoy time with me and vice versa.

I believe in teaching and inspiring as we go through life. And the way we live with SS is the “Professor” in all of us.

• Do we understand that we are not the only ones who suffer because of our condition?
• Do we see that our loved ones and friends no longer have us the way they were used to?

We are not as eager to get up and go or we simply cannot do some particular physical or mental activity anymore, or at least, not in the same manner. It is important that I recognize this so I can help them understand. This helps us create alternatives so we can still enjoy special times together in whatever we do. It is also very important to me that I be a positive person while we engage in these wonderful times together.

I have always had the attitude “Why Not Me?” I don’t think I’m special in any way that should exempt me from having a disease. Someone has to have them, if for statistical purposes only! I’ve shared with my sons that perhaps I was chosen because I am a very tough and strong willed person. Maybe I can handle it, or learn to, better than others. Whatever the reason, I have it and I’m okay with that.

A younger lady doctor, who was one of my most ardent advocates, convinced me to use pain medication when necessary, which was something I was quite opposed to. She was a saint for spending so much time with me regarding all my health issues including the pain. Being in extreme pain frequently is one of the toughest things we face. Oh how we cherish those days when the stars align in our favor and we have a day, or even a few, when we wonder if our SS is getting better. Sjögren’s doesn’t give us too much time to contemplate this crazy notion before it thumps us on the forehead and awakens us from that dream. I now use pain medication when I really need it and during times when I can feel symptoms coming on that would have put me down for a while. I have accepted that for me these meds are viable and can help me salvage more quality time. And I love having time just like everyone else!

It is important for me to be active in the things I like and enjoy. This gives me a chance to use and try to preserve what’s left of my mind and memory. Teaching and supporting others are two of those. I volunteer with organizations and the SSF that allow me to do so. It is very good for my mental attitude to be engaged in activities that can help others. I truly enjoy being a part of these. So I guess it is somewhat selfish too. And selfish is okay with me, we have to acknowledge that we all have special “things” we must do for ourselves. Sometimes they may seem simple to others, but just sitting or lying down a couple times a day is difficult for us to do. Why? Well for me it is related to my upbringing and age. We just went all day until bedtime because there was always something that needed to be done and you didn’t take a break until it was accomplished.

Having SS means we need to change the rules that fit us prior to that time. We need to give ourselves permission to do the things that can assist us. In addition to taking real breaks, I try to see my massage therapist as often as I can afford it. I believe massage is one of the most beneficial treatments for my body, mind and soul. Although I’m not certain how I know this since I usually fall asleep between the more painful spots!

George Strait, the country singer (I’m a Westerner, so I like country music) has a song entitled: “Here For A Good Time.” It speaks very closely to my way of living my life.

I’m not gonna lay around and whine and moan
Because somebody done done me wrong
Don't think for a minute that I'm gonna sit around
And sing some old sad song
I believe it's half full not a half empty glass
Every day I wake up knowing it could be my last
I ain't here for a long time
I'm here for a good time
So bring on the sunshine
To hell with the red wine
Pour me some moonshine
When I'm gone put it in stone
He left nothing behind
I ain't here for a long time
I'm here for a good time
Folks are always dreamin' bout what they'd like to do
But I like to do just what I like
I'll take the chance, dance the dance
It might be wrong but then again it might be right
There's no way of knowing what tomorrow brings
Life's too short to waste it
I say bring on anything.
I ain't here for a long time
I'm here for a good time
So bring on the sunshine
To hell with the red wine
Pour me some moonshine
When I'm gone put it in stone
He left nothing behind
I ain't here for a long time
I'm here for a good time
I ain't here for a long time
I'm here for a good time

Maybe they will put on my stone: “He had Sjögren’s and he left nothing behind.” Yep, I’m a Sjogrenite and so much more. I'm proud of the fact that it will never beat me!

-Richard 
Meridian, Idaho

 

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

Help us Celebrate World Sjogren's Day- July 23, 2013

 
Dr Sjogren

World Sjögren's Day was created to commemorate the birthday of Dr. Henrik Sjögren, a Swedish ophthalmologist, who discovered Sjögren's in 1933.

On July 23rd, the Sjögren's Syndrome Foundation will join with other Sjögren's organizations around the world to celebrate the 4th annual World Sjögren's Day and what would have been Dr. Henrik Sjögren's 114th birthday. 

How Can You Help Make A Difference?

  • Make a donation to World Sjögren's Day and help us continue to further Sjögren's research, shorten the time it takes to diagnose and encourage new therapuetics. Click Here to make a donation in honor of World Sjögren's Day. Every gift will go to support research and education for the disease that Dr. Sjögren devoted his life to.
     
  • Help increase awareness and raise funds by creating your own personalized fundraising page by clicking here. Share your story and educate your family & friends about Sjögren's while raising much needed funds to help further the research efforts of the SSF.
     
  • Click here to print a fact sheet and use it to share information about Sjögren's with your friends, family, neighbors, work colleagues and local community. This is an ideal opportunity to help raise awareness for this little known but very common disease.


You can make a difference!

 Please comment below and share with us how you're planning to celebrate World Sjögren’s Day. Or let us know what it was like to talk to someone in your life about Sjögren’s.

Pulmonary Manifestations and Sjogren’s Pulmonary Clinics

 

Many people are surprised to realize that Sjögren’s ("SHOW-grins") is the second most prevalentdescribe the image autoimmune disorder, striking as many as 4 million Americans with an estimated 3 million cases currently undiagnosed. While 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 5 years from the onset of symptoms, which is why the Foundation launched our 5-Year Breakthrough goal in 2012: "To shorten the time to diagnose Sjögren’s by 50% in 5 Years."

Sjögren’s is a systemic disease in which the body’s immune system mistakenly attacks its own moisture producing glands. The hallmark symptoms are dry eye, dry mouth, fatigue and joint pain, but Sjögren’s can affect any body organ or system. Interstitial lung disease is the most common pulmonary manifestation in Sjögren’s, but pulmonary hypertension, amyloidosis, cystic lung disease and MALT lymphoma can also occur in the lungs. Few studies have been done in pulmonary manifestations of Sjögren’s, and few pulmonary experts who are also knowledgeable about Sjögren’s have been available to patients. 

To change this, the Sjögren’s Syndrome Foundation is now partnering with The LAM Foundation to create Sjögren’s Pulmonary Clinics. We applaud their vision of creating these clinics to improve the care and treatment of patients. Our hope is that these clinics will provide our patients with expert specialized care and lead to an expanded interest in pulmonary manifestations in Sjögren’s and future studies that will increase our knowledge and improve future care in this field.

26 Pulmonary Clinics included in the LAM Network that will be expanded to become Sjögren’s Pulmonary Clinics.

Click Here to view Pulmonary Clinics

The Sjögren’s Syndrome Foundation is pleased to partner with the LAM clinics in this important endeavor. 


Depression and Sjogren’s

 

describe the imageQ. Is depression common among Sjögren’s patients?

A. Depression is a mood disorder with symptoms ranging from feelings of excessive sadness, increased irritability, sleeplessness or excessive sleep, fatigue, impaired ability to concentrate, loss of appetite, loss of interest in once-enjoyed activities and loss of sexual drive to feelings of hopelessness and thoughts of suicide. Not all people who feel “depressed” have clinical depression, and not all people with clinical depression feel “depressed.”

Faced with a diagnosis of a chronic disease of unknown cause with an often variable and unpredictable course, patients can react with fear, anxiety and depression. As with many other chronic diseases, Sjögren’s syndrome (SS) patients report feeling depressed more frequently than do healthy individuals in the general population. In one study, 32% of SS patients reported “possible” clinical depression, which was significantly more frequent than in healthy age-matched female controls.

Symptoms of depression such as fatigue, altered sleep, a change in appetite, loss of interest and mood changes can be seen in medical conditions that can also be associated with Sjögren’s. These include anemia, thyroid disease and fibromyalgia syndrome. Treatment of these conditions can correct the symptoms that might otherwise be attributed to “depression.”

Fatigue is very common in patients with SS. Although fatigue is more frequently observed in SS patients with depression than SS patients without depression, most SS patients with fatigue are not depressed. Fatigue, as noted above, can be caused by anemia or thyroid disease but it might also be caused by Sjögren’s itself and as such may respond to treatment of SS.

After medical conditions that can mimic symptoms of depression are ruled out, traditional treatment of depression with support, counseling, psychotherapy and anti-depressant medications is effective in SS patients. If you think you might be depressed, remember that you are not alone and the feelings you are experiencing can be reversed. It is important that you speak with your doctor so that your symptoms can be evaluated and the proper treatment can be prescribed for you.

-Neil I. Stahl, MD
This article was first published in The Moisture Seekers, the SSF monthly member newsletter

Sjogren's Acronym

 

describe the imageThis Sjögren's acronym was sent to the Foundation by a member's husband. He wrote this for his wife during Sjögren's awareness month in April and has allowed us to share it.

S- So dry – both my mouth and my eyes
j- Just feel miserable, much of the time
ö- Only others with Sjögren’s really understand what it’s like
g- Goggles, eye drops, gels, mints – I must’ve tried them all
r- Restasis – one magic medicine that can help
e- Every once in a while, a good day!
n- Never gonna’ give up, no matter how I feel
'
s- So tired, so sore, but tomorrow might be better!

Having positive support can be very important when living with a chronic illness. The Foundation encourages you to join a local support group, become a member of the Foundation or comment on blog posts and connect with others here.

 Is there something you'd like to share with the Foundation- email us at tms@sjogrens.org!

Get all the Vital Sjogren's Information on an Audio CD!

 

describe the image

Missed the 2013 National Patient Conference? Get all the vital information you need on an audio CD!

Five of our most popular talks from the 2013 National Patient Conference held in Bethesda, MD are available for purchase as audio CDs.  Each talk is 30-40 minutes long and comes with the handouts used by the presenter. Buy just the talks you want to hear or purchase the whole set!

 

Price:
$16 for Members
$30 for Non-members
Click here to learn about SSF membership!

Remember, if you order online you must sign in first to receive the Member discount. If you have any questions about your login information or want to order the CDs over the phone, please call the Foundation at 1-800-475-6473.
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