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

Recently Diagnosed with Sjogren’s? Here's a Place to Begin

Posted on Fri, May 25, 2012

 

When a person is diagnosed with Sjögren’s, they often don't know where to begin.

This program will introduce you to three Sjögren’s patients who will share their journey with you. In addition, you will hear from Sjögren’s experts about the causes, treatments and manifestations of Sjögren’s. From there, we hope you will have a place to begin as you develop a partnership and treatment plan with your physician.



Click Here to  Become an SSF Member

Topics: Diagnosing Sjogren's, Sjogren's, Treatment

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

SSF Launches 5- Year Breakthrough Goal!

Posted on Tue, Jan 24, 2012

After months of behind the scenes planning, the Sjögren’s Syndrome Foundation proudly announced the new 5-Year Breakthrough Goal in the January issue of The Moisture Seekers. Our goal:

 “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”

With an aggressive timeline of goals to accomplish ahead, we have created this blog to invite you to be a part of this journey with us.

We want to keep you informed of the progress we make, the hurdles we meet and how we overcome them on our way to shorting the time of diagnosis by 2017. Most importantly, we will let you know ways where you and your community can help! We will also be posting general support information for patients and their families, including updates about new resources, educational programs, coping information from physicians and much more.describe the image

As many of you know, the average time from the onset of symptoms to a diagnosis is over 5 years and we all agree that this is too long!  It will take an army to achieve our goal, but just imagine if we all band together to create a change.

Creating a future where physicians can start helping patients earlier, improve their quality of life and provide them with proper management and treatment guidelines. Imagine a future where Sjögren’s is taken more seriously by the medical community and general public, helping all patients.

 To find out more about our 5-Year Breakthrough Goal, read the three main action items below:

  1. Increasing public awareness
    Increasing awareness among the general public is not new to the SSF; however, with our new breakthrough goal, we will be focusing on more targeted communications, building relationships with the media and utilizing our Awareness Ambassadors (volunteers who help the SSF distribute awareness materials in their communities) to distribute educational information.

  2. Increasing involvement from our friends and partners
    Increasing involvement from our friends and partners is going to be critical for us to achieve this breakthrough goal.  We need to partner with our various stakeholders (pharmaceutical partners, corporate partners and friends/family) to help us spread the word about Sjögren’s.  We will be asking them all to step up and help us fundraise as well as raise awareness.  With their help, we will be making a concerted effort at media outreach, healthcare professional awareness and education as well as increasing our resources for patients.  “Every partner and friend can assist in some way, and we will be calling upon everyone to step up and help us,” said Steven Taylor.

  3. Increasing education and awareness among healthcare professionals
    Increasing education and awareness among healthcare professionals is something that current patients know is urgently needed.  Trying to get physicians and dentists to understand Sjögren’s is a major challenge, and the SSF is determined to focus on this very problem.  By increasing our visibility at professional conferences, by speaking at professional associations and by visiting one-on-one with physicians – we plan to start to change the face of Sjögren’s in the medical community.  “We are determined to have Sjögren’s at the top of their mind when they hear a patient complaining of our hallmark symptoms of dry mouth, dry eye, fatigue or joint pain,” said Lynn Petruzzi, SSF Board Chairperson.

 

con·quer (Verb)

 

Overcome and take control of (a place or people) by use of military force.

Successfully overcome (a problem or weakness).

 

Together, we can conquer Sjögren’s!

Click here to learn about becoming an  Awareness Ambassador

Topics: Diagnosing Sjogren's, Sjogren's, coping with sjogren's, 50in5: Breakthrough Goal

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