Here are a few things you can do:
- Expand your knowledge about Sjögren's. Visit our Understanding Sjögren's page where you can learn more about the disease, its symptoms and its treatment. ...
- Attend a local support group meeting with your friend or loved one. ...
- Join your friend or loved one on a visit to his or her physician's appointment. ...
- Become involved with the Sjögren's Foundation. ...
- Consider becoming a member of the Sjögren’s Foundation. ...
Full Answer
Where can I get help for Sjögren's syndrome?
Sjögren's Syndrome Program. The Penn Sjögren's Syndrome Center, part of Penn Rheumatology, provides a multidisciplinary approach to treating patients with Sjögren's syndrome. It is the only major treatment center for Sjögren's within a 100-mile radius of Philadelphia, treating patients from across the country and around the world.
What is the Sjögren's Foundation doing to support Smart Patients?
The Sjögren's Foundation is proud to partner with Smart Patients, an online community for patients and caregivers affected by Sjögren's. The Sjögren's Foundation educates patients and their families about Sjögren's, increases public and professional awareness of Sjögren's and encourages research into new treatments and a cure.
Why choose Penn's Sjögren's syndrome center?
Rheumatologists at the Penn Sjögren's Syndrome Center collaborate closely with specialists in ophthalmology, oral medicine and ENT to provide a complete diagnosis and treatment program for patients suffering from Sjögren's.
Are there any advances in Sjögren’s disease research?
… … Advancements in Sjögren's research and increased awareness for Sjögren’s speak to the continuous efforts of the Foundation’s Board of Directors and staff as well as our Medical and Scientific Advisors and the hundreds of Foundation volunteers.
How can I help someone with Sjogren's syndrome?
Lifestyle and home remediesDon't smoke. Smoking can irritate and dry out your mouth.Increase your fluid intake. Take sips of fluids, particularly water, throughout the day. ... Stimulate saliva flow. Sugarless gum or citrus-flavored hard candies can boost saliva flow. ... Try artificial saliva. ... Use nasal saline spray.
Does Sjogren's syndrome qualify for disability?
While Sjögren's syndrome initially causes dry eyes and mouth, it can also progress to cause fatigue and wreak havoc on various organs of the body. Severe cases of Sjögren's may qualify Social Security Disability Insurance Program (SSDI) disability benefits.
What helps fatigue from Sjogren's?
Here are five ideas for combatting the severe fatigue that often accompanies Sjogren's Syndrome.Stay hydrated. Dehydration can contribute to mental and physical fatigue. ... Eat well. ... Get physically active. ... Get mentally active. ... Get adequate amounts of sleep.
Is sjogrens a terminal illness?
In most people with Sjögren syndrome, dry eyes and dry mouth are the primary features of the disorder, and general health and life expectancy are largely unaffected.
How debilitating is Sjögren's syndrome?
Over time, the immune system for people with Sjogren's syndrome can damage other parts of your body, including joints, nerves, skin, and organs such as kidneys, liver, and lungs. These long-term consequences can be quite debilitating.
How does Sjogren's affect the brain?
The symptoms include headache, flu-like symptoms, confusion, and meningeal signs with or without fever. There may occur focal neurological symptoms in the form of cranial nerve palsy, cerebellum symptoms or seizures. Examination of the cerebrospinal fluid shows aseptic lymphocytic pleocytosis up to 900 cells/ml [2].
Why does sjogrens make you so tired?
Thyroid problems and anemia are common in Sjogren's syndrome patients and can cause fatigue. Usually, fatigue due to thyroid dysfunction and anemia can be resolved when the underlying problem is taken care of.
What drugs make sjogrens worse?
Avoid medicines that are known to cause dry eyes. These include antihistamines, diuretics, and some antidepressants. Talk with your doctor if you take any of these medicines. Sometimes the benefits of a medicine outweigh the risks.
How often does Sjogren's turn into lymphoma?
People with two or fewer of these signs and symptoms have a 3.8 percent chance of developing the condition. Those with three to six risk factors have a 39.9 percent chance of developing lymphoma.
Are there different stages of Sjogren's?
We divided SS patients into three stages: stage I is glandular SS, stage II is extraglandular SS, and stage III is extraglandular SS with lymphoid malignancy. The lymphoaggressive nature of the disease appears to lead SS patients from stage I to II and from stage II to III.
Does sjogrens get worse with age?
Sjögren Syndrome is a chronic disease that progresses very slowly over time. Because of this, there may be a period of up to 10 years between the onset of symptoms and the diagnosis of the disease.
Can Sjogren's turn into lupus?
It is estimated that up to 15 to 18 percent of people living with lupus also have Sjogren's syndrome. It is considered primary Sjogren's syndrome when it occurs on its own, with no other autoimmune conditions present. If a person has it and another autoimmune issue, it is considered secondary Sjogren's syndrome.
Does sjogrens cause extreme fatigue?
The prevalence of fatigue in primary Sjögren's syndrome (pSS) is approximately 65-70%, and often reported as the most debilitating symptom (6). Next to pain and dryness, fatigue was one of the most common complaints that the patients would like to have improved (7).
Is chronic dry eye a disability?
To qualify for Social Security Disability benefits, you must have dry eyes which are so severe that they are not controlled with medication and are preventing you from being able to work.
Can sjogrens make you gain weight?
Sjögren's syndrome doesn't cause weight gain. However, medications (like steroids) used to treat symptoms may cause weight gain. Also, there are conditions like hypothyroidism that may be linked to Sjögren's syndrome that can result in unintended weight gain.
Does sjogrens get worse?
Sjögren's syndrome is a long-term condition that does not usually get better on its own, although the symptoms can often be treated. For some people it may just be a bit of a nuisance, while for others it can have a big impact on their daily life.
Mouth
The symptom most associated with SS is oral (mouth) dryness, known as xerostomia. Other oral symptoms may include: burning of the tongue cracking o...
Eyes
Eye involvement is the other major manifestation of SS. People often complain of a sandy or gritty feeling in their eyes, especially in the morning...
Glands
A decrease in mucous gland secretion of the upper and lower respiratory tract will be indicated by a chronic dry cough. A decrease in mucous gland...
Extraglandular
Symptoms that occur outside the glands are seen in one-third of people with primary SS, but rarely in those with secondary syndrome. These extragla...
How to improve quality of life for Sjögren's syndrome?
Adjusting your diet, understanding how to manage symptoms and attending support groups can improve the quality of life for those with Sjögren's syndrome.
What tests are used to confirm Sjögren's?
If Sjögren's is suspected, a series of physical exams, blood tests, ophthalmologic tests and dental tests are used to confirm the diagnosis. The course of treatment may include prescription medications, over-the-counter products and non-medical therapy.
What percentage of Sjogren's disease is caused by lymphoma?
In 4-5 percent of cases, Sjogren's may also be complicated by lymphomas.
Where is the Sjögren's Center located?
Based at Penn Medicine University City, Penn's Sjögren's Syndrome Center serves as the regional headquarters of the Philadelphia Chapter of the Sjögren's Syndrome Foundation.
Can Sjogren's disease affect the kidneys?
In about 25 percent of cases, the disease may spread to the internal organs and cause arthritis, fatigue or problems of the lungs, kidneys and central nervous system. In 4-5 percent of cases, Sjogren's may also be complicated by lymphomas.
What is Sjögren’s?
Sjögren's is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.
What are the advancements in Sjögren's research?
Advancements in Sjögren's research and increased awareness for Sjögren’s speak to the continuous efforts of the Foundation’s Board of Directors and staff as well as our Medical and Scientific Advisors and the hundreds of Foundation volunteers.
How long does it take to get Sjögren's?
The Foundation was excited to announce that we surpassed our 5 year breakthrough goal : To Shorten the time to diagnose Sjögren’s by 50% in 5 years and it now currently takes 2.8 years, down from 6 years, to receive a proper diagnosis.
How much money does Sjögren's Foundation raise?
In 2019, the Sjögren's Foundation raised over $3 million dollars to support our mission. These funds are being used to further research, education, patient initiatives and awareness of this complex disease.
How much money did Sjögren's raise in 2019?
Over $3 million raised in 2019. In 2019, the Sjögren's Foundation raised over $3 million dollars to support our mission. These funds are being used to further research, education, patient initiatives and awareness of this complex disease. More About Our Impact.
What is the National Sjogren's Syndrome?
The National Sjogren's Syndrome is an international, non-profit organization dedicated to providing information and support to individuals with Sjogren's syndrome, family members, and healthcare professionals.
When was Sjogren's Syndrome Association established?
Established in 1989, the Swedish Sjogren's Syndrome Association provides networking opportunities, engages in patient education, and offers a variety of materials including reports and a regular newsletter.
Does NORD endorse organizations?
There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice.
What is Sjogren's Advocate?
Sjogren’s Advocate will help you learn to recognize Sjogren’s and take the first steps to diagnosis. Most patients experience years, and sometimes decades, of disease progression before they finally get care. Sjogren’s Advocate makes it easy for you to take action.
Why are PCPs unfamiliar with Sjogren's?
My experience teaching PCPs over the past decade reveals that most remain unfamiliar with Sjogren's because they are not taught about it during medical training.
How many people die from Sjogren's disease?
They were generally unaware that an estimated10% of patients die from direct Sjogren’s complications ( 24) such as lung disease or lymphoma, or that comorbidities also increase morbidity and mortality ( 42, 61 ). This got their attention!
Can PCPs diagnose Sjogren's?
PCPs are often the first clinicians, along with eye doctors, that encounter early Sjogren's presentations. When Sjogren's is diagnosed early enough, it can make a big difference in outcome and quality of life.
Can a rheumatologist print out Sjogren's Advocate?
However, I don't generally recommend printing out Sjogren's Advocate pages or blog posts for rheumatologists unless they are familiar with and supportive of the website. They may not be receptive to information written by a non-rheumatologist. However, they are often receptive to journal articles from academic sources.
Is Sjogren's RA rare?
Most thought that Sjogren’s is rare. Sjogren’s is about as common as rheumatoid arthritis (RA), impacting about 1% of the U.S. population, mostly women ( 1 ). Sjogren’s is just as important as RA to diagnose and treat. Almost all of the PCPs viewed Sjogren’s as a mild dryness disease.
Can Sjogren's kill you?
( 15) Sjogren’s is a serious disease, with significant morbidity. Many PCPs who attend my lectures are shocked to learn that Sjogren’s can actually kill you ( 24 ). They have usually been taught that it is just a nuisance dryness disease.
How old do you have to be to get Sjogren's syndrome?
Although you can develop Sjogren's syndrome at any age, most people are older than 40 at the time of diagnosis. The condition is much more common in women. Treatment focuses on relieving symptoms.
What are the complications of Sjogren's syndrome?
The most common complications of Sjogren's syndrome involve your eyes and mouth. Dental cavities. Because saliva helps protect the teeth from the bacteria that cause cavities, you're more prone to developing cavities if your mouth is dry. Yeast infections.
What is Show Grins?
Sjogren's (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus.
Why do some people develop Sjogren's syndrome?
Scientists aren't certain why some people develop Sjogren's syndrome. Certain genes put people at higher risk of the disorder, but it appears that a triggering mechanism — such as infection with a particular virus or strain of bacteria — is also necessary.
Can Sjogren's cause eye sensitivity?
Yeast infections. People with Sjogren's syndrome are much more likely to develop oral thrush, a yeast infection in the mouth. Vision problems. Dry eyes can lead to light sensitivity, blurred vision and corneal damage.
Can a sjogren's disease cause cirrhosis?
Inflammation can cause pneumonia, bronchitis or other problems in your lungs; lead to problems with kidney function; and cause hepatitis or cirrhosis in your liver. Lymph nodes. A small percentage of people with Sjogren's syndrome develop cancer of the lymph nodes (lymphoma). Nerves.
Is Sjogren's syndrome more common in older people?
Sjogren's syndrome is usually diagnosed in people older than 40. Sex. Women are much more likely to have Sjogren's syndrome. Rheumatic disease. It's common for people who have Sjogren's syndrome to also have a rheumatic disease — such as rheumatoid arthritis or lupus.
