Raynaud’s Syndrome occurs in approximately 15-30% of patients with Sjögren’s.
Raynaud’s Syndrome (sometimes called Raynaud’s phenomenon) is defined as repeated episodes of color changes in the fingers and/or toes with exposure to cold temperatures or during episodes of emotional stress. The color changes are due to a spasm of the blood vessels that feed the fingers and toes. The digits typically turn very white, then can take on a bluish color with prolonged exposure to the cold, and finally can turn very red as blood flow resumes.
Sjogren's Syndrome Foundation's Top 5 Tips to control your Raynaud's Syndrome:
If you have access to water when a flare starts, run warm water over your fingers and toes until skin color returns to normal.
Do not smoke — this constricts the blood vessels that feed the hands and feet.
Moisturize your hands and feet every day to prevent your skin from cracking.
When your hands or feet start to feel cold, wiggle your fingers and toes, move your arms and legs around to get blood flowing, or put your hands under your armpits to warm them up.
Talk to your doctor about your symptoms. Several medications can be used to help the vessels stay dilated, including a class of blood pressure medications called calcium channel blockers. Some medicines, such as beta blockers used for high blood pressure, may make Raynaud’s worse.
These Tips are from the SSF Patient Education Sheet: Raynaud's Syndrome- Click here to view the full sheet
Click Here to see all of the SSF Patient Education Sheets
The Sjögren's Syndrome Foundation is thrilled to welcome Shannon Boxx as the 2013 Honorary Walkabout Chairperson!
Shannon Boxx, member of the U.S. National Women’s Soccer Team and Olympic gold medalist, has been an inspiring Sjögren’s advocate since she announced she has Sjögren’s this past year and was connected to the Foundation by Athletes for Hope. Shannon is now taking Sjögren’s awareness to communities around the United States by stepping up as the SSF Honorary Walkabout Chairperson!
Click here to learn more about SSF Walkabouts and an event calendar
Want to learn more about Shannon's journey with Sjgren's? Listen to her interview with American Airlines and US Airways about being diagnosed with Sjgren's and why raising awareness is so important to her by clicking here.
We hope you will join Shannon and step up for Sjgren's in your community by participating in a SSF Walkabout!
|Due to the overwhelming amount of interest, we have decided to giveaway 3 Free Conference Registrations.
Congratulations to our winners: Donna, Mary & Shawn. The winners have all been notified personally by the SSF and thank you all for the support!
Entering is easy! (this givaway is now closed)
To enter, all you have to do is comment "Happy Valentine's Day" below by 11:59pm EST today- February 14, 2013. The Foundation will privately email the two winners on February 15, 2013. Winners will be picked at random and the registrations are non transferable. Please email us at firstname.lastname@example.org with any questions.
Hyatt Regency Bethesda
One Bethesda Metro Center
Bethesda, Maryland 20814
Presentation topics will include:
Overview of Sjögren’s Syndrome
Sex and Living with Sjögren’s
Biologic Therapies and Sjögren’s
Understanding Blood Changes and Test Results
Caregiver/Patient Perspective on Sjögren’s
Neurological Complications and Sjögren’s
Dry Eye and Sjögren’s
Dry Mouth and Sjögren’s
Podiatry Issues and Sjögren’s
Hope for the Future: Research Update
"What the heck is that?"
"Well, that makes a lot of sense but now what?"
"I'm a man, I cannot have this."
“What? That’s all I need on top of Fibromyalgia (FMS).”
“I told you so!”
"I remember seeing that disease in nursing school a long time ago."
"Thank God for the diagnosis!"
"That explains a lot"
“WHAT IS THAT?”
“How is this going to affect my life?”
“I have what?”
Faces of Sjögren's- You are not alone!
As the Foundation announced in the January 2013 issue of The Moisture Seekers, we've added a new section to our website: Faces of Sjögren's.
With the launch of the SSF 5-Year Breakthrough Goal, 50in5: “To shorten the time to diagnose Sjögren’s by 50% in 5 years” we are also hoping to change how Sjögren’s is understood.
On this new web page, patients share their journey with Sjögren's starting from their first thought after being diagnosed to where they are currently. Now that you've read their first thought, find out what happens next and read their full story on our website.
Sjögren's is a systemic disease with its symptoms felt throughout the entire body. While dry skin, dry nails and dry hair are not among the serious manifestations of Sjogren's, they are prevalent in many patients’ lives.
Learning to live with Sjögren's is learning what your body's new normal is- including what type of daily skin products and makeup one uses. Recently the Foundation has received a lot of questions about this topic and since some of the best tips the Foundation knows have come from patients, we want to hear from you!
- What makeup and skin care products have you found that work well with your Sjögren's?
- What type of shampoo would you recommend?
- As a male patient, what aftershave or face moisturizer do you use?
- Is there a nail polish that works best for you?
Just as one type of eye drop may work well for one patient but not another, you will need to discover what works best for your body.
Please comment below and share with us what you would suggest.
What is Brain Fog? Brain Fog is a lay term to describe fluctuating mild memory loss that is inappropriate for a person’s age. It may include forgetfulness, spaciness, confusion, decreased ability to pay attention, an inability to focus, and difficulty in processing information. Remember that gradual cognitive decline from early adulthood is a fact of life. Brain Fog can occur in Sjögren’s syndrome (SS), but other factors might cause these symptoms and should be considered by you and your doctor.
What YOU can do about Brain Fog:
Manage your lifestyle to optimize your health and sense of well being.
Develop a close working relationship with your doctor(s):
- Always report changes in cognition/memory and mood (depression, anxiety).
- Make sure your physician knows about all the prescription and OTC medications you are taking. Especially in patients
- over 65-70 years of age, a major cause of cognitive dysfunction can be side effects of drugs and drug interactions.
- Inquire about your hormonal status, thyroid function, and blood pressure.
- Rejuvenate with sufficient sleep. If after 8-9 hours of sleep you are still tired, tell your doctor.
- Minimize stress and anxiety:
- Set realistic expectations
- Plan ahead
- Take breaks throughout the day
- Learn relaxation exercises and practice them at regular intervals
- Balance work and leisure
- Let yourself laugh
- Talk about feelings
- Limit multi-tasking and focus on one task at a time.
- Reduce caffeine and alcohol.
- Manage effectively musculoskeletal and joint pain.
- Exercise regularly. Adequate physical exercise enhances cognition/memory.
- Train the Brain! “If you don’t use it, you will lose it.”
- Boost your brain power: Continue to work into retirement (part time), learn new skills, volunteer, engage in social and mentally
stimulating activities and establish new friendships and relationships.
- Take your body to the gym and don’t forget to visit the “BRAIN SPA” – both will improve brain function.
- Recent scientific data show that longevity is associated with the successful management of chronic diseases, such as Sjögren’s, not the absence of any disease!
Suggested reading: The Memory Bible, by Gary Small, MD, Director of the UCLA Center on Aging, available from the Sjögren’s Syndrome Foundation.
***This information is from the Sjogren's Syndrome Foundation's "Patient Education Sheet: Brain Fog." Click Here to view more Patient Education Sheets from the SSF.
We encourage you to comment below and share what you've found helpful when dealing with Brain Fog & Sjogren's.
On July 23rd, 2012 the Sjögren’s Syndrome Foundation joined with other Sjögren’s groups around the world to celebrate World Sjögren’s DayWorld Sjögren’s Day and got a BIG boost from Venus Williams, professional tennis player and Olympic Gold Medalist as well as fellow Sjogren’s patient
A year after helping to increase awareness for Sjogren’s when she publicly announced her diagnosis, Venus once again stood up for Sjögren’s awareness when she carried the Olympic torch through the streets of London on, what more appropriate day, World Sjögren’s Day. (July 23rd)
Here is an excerpt from her Facebook page:
“Today was an amazing day. I carried the Olympic flame right through Wimbledon! I truly felt the Olympic spirit, participation, giving your best and bringing people together no matter what their background of differences. This Olympics is very special to me having battled through an auto immune disease in the last year. It was my dream come true to qualify for the Olympics. To carry the torch today on World Sjögren’s day was so fitting. My run with the flame today represented triumph for everyone battling an auto immune disease. I'm planning on enjoying every day at the Olympics, I won't take even one for granted!”
As you know, World Sjögren’s Day commemorates the birthday of Henrik Sjögren, who first identified Sjögren’s in 1933. This past summer, we asked members and supporters to use World Sjögren’s Day as a reason to talk about Sjögren’s. Initially, sharing can be a scary thought but you will never know what support is out there if you don’t. Awareness can be reached one person at a time and we encourage everyone to find reasons in your own life to talk about Sjögren’s.
Venus went on to win the Women’s Doubles Olympic Tennis Gold Medal with her sister, Serena Williams. The Foundation wants to not only thank Venus for stepping up for Sjögren’s awareness but also for being inspiration to all Sjögren’s patients.
The Sjögren’s Syndrome Foundation’s 5-Year Breakthrough Goal:“To shorten the time to diagnose Sjögren’s by 50% in 5 years,” is the largest initiative that the SSF has ever undertaken. This is why we are working with an outside marketing research firm to help us gather information needed to reach our goal, track our progress and tell us how long it currently is taking patients to be diagnosed with Sjögren’s.
This summer, the SSF and our marketing research firm surveyed newly diagnosed Sjögren’s patients from 2011, and of those patients surveyed, it was determined that it currently takes patients on average 4.7 years to be diagnosed with Sjögren’s. While 4.7 years is a great initial improvement from all past studies, we probably all can agree that it is still too long to wait for an accurate diagnosis!
In addition to the length of time to reach diagnosis, the SSF also was able to gather valuable data about the average age of those being diagnosed, which medical professionals are diagnosing Sjögren’s, which symptoms are causing patients to seek a diagnosis and what symptoms patients are currently experiencing. This new information will help the SSF in highlighting gaps in patients’ medical care as well as where we may be able to capture potential patients before they suffer for nearly 5 years. We then can direct our marketing efforts toward those symptoms and medical professionals.
So, now, the SSF can be proud that we have been able to decrease the time for diagnosis from nearly 8 years back in 2007 to now 4.7 years. This baseline will give us our starting point to reach our goal of shortening the time to diagnose Sjögren’s by 50% over the next 5 years. We hope that by 2017, we can say that it only takes a little over 2 years to obtain a proper diagnosis!
We can do this – but we still need more help! We thank those who have been participating in our awareness initiatives and coming out to fundraising events as well as those who support the SSF. However, there are more ways to get connected and we hope you will all step up and help us. Learn more about the SSF and how you can assist us by visiting www.sjogrens.org or calling the SSF office at 800-475-6473.
*** This was first published in the October issue of The Moisture Seekers, our patient newsletter for SSF members.
Erin, diagnosed with Sjögren’s in February of 2008, challenged herself to run as a part of Team Sjögren’s Turkey Trots in 2011 and shares her experience below of running while managing her health. Here’s Erin’s story:
I ran track in high school and college and have always enjoyed running, so I got very excited when I heard there was a Team Sjögren’s Turkey Trot fundraising event. I had always wanted to participate in these events and once I knew I could bring awareness and raise money for Sjögren’s, I wanted to do it right away.
My doctor continuously talks to me about keeping up with my physical fitness, not only for my personal well being but to help fight off sickness that Sjögren’s patients are prone to and I thought joining Team Sjögren’s was a way to accomplish that. Once I decided to run, my husband, Mom, older sister, and her husband, chose to run with me.
Running for long periods of time was definitely difficult and I’m finding my recovery time to be much longer as I get older. I don’t bounce back the way I used to. However, when I was running the race, knowing that I was running for a cause I’m directly affected by kept me motivated and pushing for the finish line.
I would train with my husband and made sure I was eating healthy options and sleeping a sufficient amount. I started noticing the negative effect it would have on my body if I didn’t get enough sleep or ate the wrong food. Running is hard enough, but when you have a weakened immune system it can take so much more out of you. You need to have a certain level of mental toughness along with support to get through those hard times.
Even though the training was hard for me, I absolutely loved being able to participate in a race that could not only bring awareness to this disease but also raise funds for a possible cure. I also liked being able to connect with others who have Sjögren’s. My family and I wore our Team Sjögren’s T-Shirts and as we were racing multiple people would comment about their friends, family or themselves being affected by this disease. Knowing that the Turkey Trot was bringing people together for a cause I believed in was a wonderful feeling.
The initial thought of getting out there to run or walk in a 5K seemed like a lofty goal, but one of my biggest motivations was knowing that my family and friends were by my side. It was an incredibly uplifting experience to realize so many people believed in me and donated to my team’s fundraising efforts. I felt so proud of myself when I finished the race. I’m sure I could have run faster, but knowing I completed the race and made my family and friends proud was validation enough for me.
Thank you Erin for sharing your story and stepping up for Sjögren’s by running again this year as a part of Team Sjögren’s Turkey Trots!
This year, we hope you will also start your day of giving thanks by stepping up for Sjögren’s as apart of Team Sjögren’s Turkey Trots!
The SSF is proud of the work it funds and would like to announce the 2012-2013 Research Grant Recipients with everyone.
Click Here to view the 2012-2013 SSF Research Grant Recipients.
For almost 20 years, the Sjögren's Syndrome Foundation has been the premiere organization in Sjögren's research funding. Promoting innovative research that will have the greatest impact on the lives of those who have this prevalent and devastating disease. Currently the SSF funds more than $275,000 a year for research projects, marking a 250% increase in funds over the last five years.
The SSF is focused on many research initiatives to fulfill our mission including: the development of Clinical Practice Guidelines, the launching of a Clinical Trials Consortium, advocacy among federal research entities, and through the SSF Research Grants Program!
The SSF recognizes that we cannot make major progress until we find a more definitive and easier way to diagnose Sjögren’s. Better diagnostics is an important part of the Foundation’s 5-Year Breakthrough Goal: “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”
Click Here to learn more about these talented researchers’ projects and read their abstracts.
Thank you for your support!