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Sjögren’s Syndrome Foundation Achieves 5-Year Breakthrough Goal
Sjögren’s Syndrome Foundation Achieves
5-Year Breakthrough Goal
The Sjögren’s Syndrome Foundation (SSF) announces it achieved their 5-Year Breakthrough Goal: “To shorten the time to diagnose Sjögren’s by 50% in five years!”
In 2012, the average time it took for a patient to be accurately diagnosed with Sjögren’s, from the time they started seeking a diagnosis, was nearly six years. Today, the Foundation is honored and excited to announce that they have not only reached their Goal but have surpassed it, by reporting the average diagnosis time is currently 2.8 years! Click here to learn more.
Daily Posts: 30 Faces for Sjögren's Awareness Month
Thank you for following our “30 Faces for Sjögren’s Awareness” April Campaign and helping educate the public about this complex disease and how it affects those living with it.
On behalf of the millions of patients living with Sjögren's, thank you for your support of the SSF and our mission. Together we will conquer and transform the future of the disease, giving hope to all patients!
April is Sjögren's Awareness Month and using our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease.
Day 30
Emily T., 26 (diagnosed at 12), Executive Assistant
My best Sjögren's tip is do not feel guilty about your diagnosis! While I still struggle with feeling guilty if I have to say “no” because I am not feeling well, I encourage us all to rather see this as a chance to help others understand how it looks to be chronically ill and still live your life. People with chronic illness are some of the most compassionate, kind, and persevering individuals I have met.
Click here to learn more about Sjögren's and how to get involved with the SSF.
Day 29
Sherri F., 53 (diagnosed at 50), Secretary
My three most difficult Sjögren's symptoms are fatigue, joint pain and brain fog. My best tip is to learn your limitations and work within those. Life can still work for you, if you pay attention to what your body tells you.
Click here to learn more about Sjögren's fatigue.
Day 28
Angela B., 39 (diagnosed at 36), Stay at home mom
I wish people understood how debilitating this disease can be. I had to quit working because of my constant pain and fatigue from Sjögren’s. There are so many things that I’m unable to do now and I live with constant guilt that I am not a good enough mom/wife/sister/friend.
Day 27
Aleina M., 21 (diagnosed at 18)
One of my most difficult Sjögren's symptoms is joint pain. Walking across campus to class is a very simple task for most college students, but I have to take breaks along the way because of the joint pain and burning sensation in my ankles.
In addition to SSF volunteer support groups across the US, the SSF hosts support groups for men living with Sjogren’s, children living with Sjögren's and women under 40 living with Sjögren's. Click here to learn more about SSF support groups and email SSF@sjogrens.org with any questions.
Day 26
Yolanda G., 55 (diagnosed at 44), Determined
The uncertainty of Sjögren's is daunting. Sometimes I worry about if a current symptom will worsen, or a new symptom will develop. My best tip is, if possible, continue to do what makes life enjoyable to you!
Click here to learn more about the SSF Research Grant Program.
Day 25
Brad L., 62 (diagnosed at 52), Business Consultant
My three most difficult Sjögren's symptoms are dry mouth, dry throat and joint pain. My best tip is to make sure you and your family are connected to the Sjögren's Syndrome Foundation. The discovery of the SSF and their information has been life changing.
Click here to learn more about how to connect with the SSF by becoming a member.
Day 24
Gianna H., 30 (diagnosed at 19), Vice President of Finance
I wish people knew that I lie about my Sjögren's because I don’t want to be perceived as a complainer since I look like a normal, healthy woman. If you asked me how I am, I would tell you “fine,” but I am suffering. I frequently have swollen/painful lymph nodes, I am constantly tired and every day I peel my painfully dry eyes open.
My best tip is do not let this disease define you. Your dreams are still achievable, you just have to take a different path to get there!
Click here to learn more about how to help your Sjögren's dry eye in the morning.
Day 23
SydneyAnne S., 65 (diagnosed at 38), Grandmother
Having this disease for nearly 30 years, I have suffered from debilitating arthritis, various dry eye issues, lost all my beautiful teeth and was diagnosed with cancer. Everything has been linked back to my Sjögren’s, but the hardest thing is having people look at you with a question mark in their eyes and wondering if it’s all in my head. Education and awareness is key
Click on the link below to learn more about Sjögren’s & Lymphoma.
Day 22
Jeannine V., 27 (diagnosed at 20), Soldier
My three most difficult Sjögren's symptoms are dry eyes, breathing/ lung complications and dry mouth. I wish people were more informed about this disease.
Click here to learn more about Sjögren’s Pulmonary Manifestations.
Day 21
Ines F., 43 (diagnosed at 37), Chef
I wish people knew that Sjögren's is so much more than dryness. It’s a debilitating disease that affects the whole body. But I won’t let Sjögren’s control my life!
Click here to learn more about how Sjögren’s affects the body.
Day 20
Michelle V., 33 (diagnosed at 33), Social worker
I’ve lost a lot of weight since being diagnosed with Sjögren's, which has caused me to have low self-esteem/ poor body image, and the combination of my symptoms makes me feel less than. I wish people knew that this disease causes good days and bad days.
Click here to learn more about depression and Sjögren's.
Day 19
Patricia L., 63 (diagnosed at 59), Retired Educator
I constantly worry about what’s to come with my Sjögren’s. Are my current symptoms the only ones I’ll have? How much more serious will my disease progress? Are there other manifestations that have not yet been detected? What will the future hold for my children and grandchildren if they’re diagnosed with Sjögren’s?
Day 18
Stephanie G., 32 (diagnosed at 19), Healthcare Professional
I was diagnosed when I was pregnant with my daughter, who is now 11, and the doctor's found she had congenital heart block (CHB). There’s a connection between Sjögren's/ Lupus and children born with CHB, which is why I was tested for those antibodies. Being born with CHB means that one day my daughter will need a pacemaker for her safety and overall health.
Day 17
Stacy R., 34 (diagnosed at 34), Business Owner
Some days it’s hard to even get out of bed. Sjögren's is often invisible, so people don’t realize how debilitating it can be. My best tip is to take care of yourself and be honest with your doctors! If you are living with pain, ask for help to find what your best treatment option is.
Click here to learn more about chronic pain & Sjögren’s.
Day 16
AJ, 13 (diagnosed at 7)
I don’t know how my Sjögren’s will progress in the future, which is why I need to be an advocate; for myself and others who are living with the unknown because of this disease.
Click here to learn more about how AJ is standing up for Sjögren’s at the Philadelphia Walk.
Day 15
Nanako M., 57 (diagnosed at 42), Retired
My best Sjögren’s tip is to not let this disease take you down! Set realistic expectations on what you can accomplish but continue to go after your dreams and adventures.
Click here to learn more about Sjögren’s from the SSF blog.
Day 14
Joyce G., 41 (diagnosed at 37), Mom
I want people to know that Sjögren’s is real and a very serious disease. It takes a toll not only on the patient, but its effects are also felt by family and friends. My three most difficult symptoms are chronic pain, chronic fatigue and sensitivity to sunlight.
Click here to learn more about sun sensitivity and Sjögren’s.
Day 13
Deb H., 65 (diagnosed at 60)
Even though I don't look sick, every day I live with this debilitating disease. My best #Sjögrens tip is to try and be your own best advocate because it can be very challenging to find physicians who are knowledgeable about this complex disease.
Click here to view the SSF “Tracking Your Symptoms” worksheet.
Day 12
Lauren G., 36 (diagnosed at 35), Creative Director
Some of my most difficult Sjögren's symptoms are reoccurring sinusitis, esophageal irritation, dry skin and brain fog, but the hardest part of living with this disease feels taboo to talk about. It is the added risks to pregnancy. While everyone’s Sjögren’s journey looks and feels different, know you are not alone!
Click here to learn more about how you can help raise awareness of Sjögren’s this April.
Day 11
Darlene R., 48 (diagnosed at 43)
My three most difficult Sjögren's symptoms are daily fatigue, chronic pain and autonomic dysfunction of my heart. I wish people understood the frustration of seeing multiple physicians in search for the one who truly understands the totality of this disease on ones’ mind, body and spirit.
Click here to learn more about the significant physical & emotional burdens of Sjögren’s.
Day 10
Erica H., 32 (diagnosed at 31), Mom and Photographer
My best Sjögren's tip is communication. Communication with yourself about how you're truly feeling and communication with your family about specific things you need. And most importantly, communication with your doctor. No one can advocate for your care better than you. Our doctors need to know how we are feeling and what we hope our future looks like while living with this disease.
Click here to learn more about how to talk with your family about Sjögren's.
Day 9
Grace T., 12, (diagnosed at 8)
My three most difficult Sjögren's symptoms are joint pain, fatigue, and nerve pain. I wish people knew that this disease exists.
Click here to learn more about Pediatric Sjögren’s.
Day 8
Joan F., 22 (diagnosed at 20 but symptom onset at age 10), Teacher
I wish people knew that Sjögren’s can affect people of all ages and in some cases is life-threatening. My best tip is to not let this disease control your life but also do not ignore your symptoms.
Click here to learn more about Sjögren's.
Day 7
Melissa P., 42 (diagnosed at 37), Full-time Manager
My three most difficult Sjögren's symptoms are joint pain, fatigue and peripheral neuropathy. I wish people would realize that just because we don't look sick doesn't mean that we are doing well. We must turn our pain into purpose- KeepFighting!
Click here to learn more about peripheral neuropathy and Sjögren's.
Day 6
David S,. 52 (diagnosed at 48), Consultant
My three most difficult Sjögren's symptoms are unpredictable fatigue, dry eyes, and digestive problems. I’ve found that acceptance of the disease helps to reduce stress.
Click here to learn more about gastrointestinal (GI) complications and Sjögren's.
Day 5
Erin W., 32 (diagnosed at 32), Physician Assistant
Having recently been diagnosed with Sjögren’s, and unknowingly struggled with the disease for years, I am now intimately aware of its widespread effects on the body. This disease is isolating and devastating. My hope is for further education, research, and awareness so that people like me can get the help they need to live fuller, healthier lives.
Click here to learn more about how you can support the SSF and our mission by becoming a member.
Day 4
Christina G., 45 (diagnosed at 40)
I lost my upper teeth to this disease in my 30s, before I was diagnosed. The Sjögren’s dry mouth progressed fast for me. I had my first tooth pulled about two years after I started experiencing severe dry mouth. Six years after that tooth being pulled, I had to remove all my upper teeth.
Click here to learn more about the SSF Clinical Practice Guidelines “Caries Prevention” for Oral Management in Sjögren’s Patients.
Day 3
Joann C., 65 (diagnosed at 54), Counselor
I try to live each day to my fullest because I am not defined by my disease. Help others understand what to expect by talking about your Sjögren’s and don’t be afraid to talk to medical professionals about the disease. There are still many who don’t know about Sjögren’s - let’s help educate them!
Click here to learn more about Sjögren's.
Day 2
Ellen B., 26 (diagnosed at 25), Critical Care Registered Nurse
During my most severe Sjögren's flare, when I was diagnosed, I had life-threatening swelling in my face, lips, and throat with a red rash all over my body. I was unable to walk at times because of weakness and joint pain. Sjögren's can be extremely severe, scary, and at times life-threatening. To protect my health, I've had to learn to say no and set boundaries.
Click here to learn more about a Sjögren's flare.
Day 1
Melissa F., 42, (diagnosed at 36), Stay at home mom (Former RN)
I wish people knew that Sjögren's is more than dry eyes and dry mouth. It has affected every organ in my body. The skin being the biggest one, and the heart being the most important one.
Click here to learn more about the symptoms of Sjögren's.
Questionnaire Study: Oral Health Related Quality of Life in Sjögren’s Patients
The SSF strives to foster research that will have the greatest potential impact on Sjögren’s patients, ensuring new therapeutics are developed and a cure found.
Today, we are sharing the study Oral Health Related Quality of Life (OHRQoL) in Sjögren’s Patients under Principal Investigator Dr. Athena Papas at Tufts University School of Dental Medicine. The purpose of this study is to determine the oral health-related quality of life in patients with Sjögren’s, either primary or secondary, using a questionnaire. This study will create a better understanding of how Sjögren’s patients are affected and aims to give insight into how these patients can best be managed in a dental setting.
Click here to participate and learn more about this voluntary and anonymous study.
30 Faces for Sjögren’s Awareness Month
With an estimated 4 million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities, it is one of the most prevalent but lesser known autoimmune diseases. Sjögren’s is also not a “cookie cutter” disease and affects patients differently. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it.
April is Sjögren's Awareness Month and using our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease. Every day in April, we will be using one or more of our social media channels to educate people about Sjögren’s. Every post is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. And know that we at the Sjögren’s Syndrome Foundation are here for you!
Get Involved!
On behalf of the millions of patients living with Sjögren's, thank you for your support of the SSF and our mission. Together we are transforming the future of Sjögren's for all patients!
The SSF office has moved!
The SSF office has recently moved! Please note the Foundation's new address is:
10701 Parkridge Blvd., Suite 170
Reston, VA 20191