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

What is Sjögren’s?

Posted on Fri, Feb 07, 2014

Sjögren’s (pronounced SHOW-grins) is a chronic autoimmune inflammatory disease in which people’s white blood cells attack their moisture-producing glands, significantly decreasing the quantity and quality of saliva and tearsThe disease was first identified by a Swedish physician, Henrik Sjögren, in 1933.

Although the hallmark symptoms are dry eyes, dry mouth, fatigue and joint pain, Sjögren’s may cause dysfunction of other organs, affecting the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the nervous system. Patients also have a higher risk of developing lymphoma. 

Today, as many as four million Americans are living with this disease. Learn more about Sjögren's and the Sjögren’s Syndrome Foundation in this short video:

Watch Steven Taylor, SSF CEO, talk more about the Foundation and the work being done to fulfill our mission of helping patients cope with their Sjögren's, increase awareness, and support research, in this ten question interview:

The SSF exists only because of its members and supporters.

By adding your voice to the fight against Sjögren’s and becoming a member, you are helping to strengthen our organization. When bound together, these voices help the SSF when we advocate for new treatments, new coverage for health insurance and when talking to companies about supporting the SSF.

With each member, the SSF voice will get stronger and we will finally make Sjögren’s a household name. 

Please join with us!

Click Here to Receive our Newsletter  by Becoming an SSF Member

Topics: Dry Mouth, Dry Eyes, Symptoms, Sjogren's, Joint Pain, Fatigue, Advocacy

Dental Insurance with Sjogren’s

Posted on Fri, Sep 14, 2012

Dry mouth, a hallmark symptom of Sjögren’s, is a decrease in both the amount and quality of saliva, causing tooth decay.  This is why Sjögren’s patients often experience large dental bills that are not considered part of major medical insurance.

dry mouthWhile there is no easy answer to this problem, there is an appeal process to have dental bills covered by medical insuance that many SSF members have had luck with.

We face a tradition in which dentistry and major medicine have been treated separately for a long time by insurance companies and even many medical professionals and educators. This is unfortunate, because the mouth often mirrors the body – in other words, oral health is an integral part of systemic health, and major medical problems often are reflected in the mouth.

What can you do?

The best tool is education. Have your doctor explain to your insurance company that Sjögren’s is a chronic and systemic illness that involves serious oral health complications and treatment. Preventive care and care when problems first arise are critical so that more major problems don’t develop in the mouth and affect the rest of the body. For example, infection in the mouth can spread in the body, and loss of teeth due to dry mouth can impact nutrition. Sjögren’s patients are susceptible to developing non-Hodgkin’s lymphoma, and this complication most frequently is manifested first in the salivary gland.

Share the information on the Foundation’s Website and a copy of the Foundation brochures on Dry Mouth and on Sjögren’s. We need to ensure that our insurance providers and our doctors understand the close connection between the mouth and the rest of the body.

The National Institutes of Health Sjögren’s Syndrome Clinic worked with the Foundation to draft a sample letter that patients can give to their oral care physicians to send to their providers.

Click here for Sample Letter

Please feel free to give this to your doctor to submit to your insurance company.

You also can contact your U.S. Senators and Representative. Click here to find out who your Congressional members are or how to contact them. Tell your Congressional members your story and ask for their help. Don’t forget to share information about your contacts and their responses with the SSF, so we can follow up on behalf of all Sjögren’s patients.

The Sjögren’s Syndrome Foundation is working hard to increase awareness and education about Sjögren’s so that patients can obtain better insurance coverage. We encourage you and others to share your stories so the Foundation can use those stories as we strive to help improve the lives of those with Sjögren’s.

Additional Dry Mouth Resources: 

Topics: Dry Mouth, Symptoms, Sjogren's, Tooth Decay, Advocacy, Health Insurance Reimbursement

Sjogren’s, More Than Dry Mouth and Dry Eyes

Posted on Mon, Apr 09, 2012

One of the main difficulties with diagnosing Sjögren’s is that symptoms vary from person to person. Often patients will visit their dentist for dry mouth or excessive tooth decay and then their primary physician for joint pain and fatigue. This makes it difficult for both the patient and physician to put the symptoms together.

As we continue on the road of achieving our breakthrough goal of shortening the time to diagnose Sjögren’s by 50% in 5 years, it is important to first identify the main reasons why people go to the doctor and seek a diagnosis.

In a recent survey of over 4,000 Sjögren’s patients, it was discovered that the four main reasons patients sought a diagnosis (in order) were:

  • Dry eyes
  • Dry mouth
  • Fatigue
  • Joint pain

While we know Sjögren’s is much more than just the 4 hallmark symptoms of fatigue, joint pain, dry eyes and dry mouth, it is important to note that dry eyes and dry mouth are the two top symptoms that caused patients to seek a diagnosis.

What is also important to note is that in the same survey, dry eyes and dry mouth were ranked #1 and #2 for symptoms patients currently still experience after diagnosis:

Common Symptoms Experienced by Patients Post Diagnosis were:

  • 92% Dry eyes
  • 91% Dry mouth
  • 86% Sleep disruption

This is why, it is imperative that we reach out to dentists, dental hygienists, ophthalmogists, optometrists and rheumatologists with information about Sjögren’s and its hallmark symptoms.These are the physicians who are on the front lines and can help speed up a  diagnosis of Sjögren’s.

So remember, the Foundation offers “Dry Eyes,” “Dry Mouth” and “What is Sjögren’s Syndrome?” brochures to all medical offices, free of charge. We hope you will consider taking some of them to your next doctor visit! Sign up to be an Awareness Ambassador or help us spread the word about Sjögren’s by distributing brochures!

Just call our office and request some brochures and we will mail them to you. Or have your doctor’s office contact us or sign-up online for brochures. Visit www.sjogrens.org or call us at 800-475-6473.

 

Click here to learn about becoming an  Awareness Ambassador

Topics: Diagnosing Sjogren's, Dry Mouth, Dry Eyes

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