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

Pulmonary Manifestations and Sjogren’s Pulmonary Clinics

Posted on Thu, Jun 27, 2013

Many people are surprised to realize that Sjögren’s ("SHOW-grins") is the second most prevalentdescribe the image autoimmune disorder, striking as many as 4 million Americans with an estimated 3 million cases currently undiagnosed. While early diagnosis and treatment are important for preventing complications with Sjögren’s, unfortunately reaching a diagnosis is often difficult and has been found to take an average of over 5 years from the onset of symptoms, which is why the Foundation launched our 5-Year Breakthrough goal in 2012: "To shorten the time to diagnose Sjögren’s by 50% in 5 Years."

Sjögren’s is a systemic disease in which the body’s immune system mistakenly attacks its own moisture producing glands. The hallmark symptoms are dry eye, dry mouth, fatigue and joint pain, but Sjögren’s can affect any body organ or system. Interstitial lung disease is the most common pulmonary manifestation in Sjögren’s, but pulmonary hypertension, amyloidosis, cystic lung disease and MALT lymphoma can also occur in the lungs. Few studies have been done in pulmonary manifestations of Sjögren’s, and few pulmonary experts who are also knowledgeable about Sjögren’s have been available to patients. 

To change this, the Sjögren’s Syndrome Foundation is now partnering with The LAM Foundation to create Sjögren’s Pulmonary Clinics. We applaud their vision of creating these clinics to improve the care and treatment of patients. Our hope is that these clinics will provide our patients with expert specialized care and lead to an expanded interest in pulmonary manifestations in Sjögren’s and future studies that will increase our knowledge and improve future care in this field.

26 Pulmonary Clinics included in the LAM Network that will be expanded to become Sjögren’s Pulmonary Clinics.

Click Here to view Pulmonary Clinics

The Sjögren’s Syndrome Foundation is pleased to partner with the LAM clinics in this important endeavor. 


Topics: Sjogren's, Research, 50in5: Breakthrough Goal, Pulmonary manifestation

When I was diagnosed with Sjogren's, my first thought was…

Posted on Tue, Jan 29, 2013

"What the heck is that?"
     -Iris

"Well, that makes a lot of sense but now what?"
     -Shelly

"I'm a man, I cannot have this."
      -Joe

“What? That’s all I need on top of Fibromyalgia (FMS).”
      -Donna

“I told you so!”
       -Sarah

"I remember seeing that disease in nursing school a long time ago."
      -Beverly

"Thank God for the diagnosis!"
      -Renee

"That explains a lot"
     -Karen

“WHAT IS THAT?”
      -Nancy

“How is this going to affect my life?”
      -Melaca

“I have what?”
      -Abby

 

describe the image

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.

 Click Here to see all of our Faces of Sjögren's stories

 

Topics: Diagnosing Sjogren's, Sjogren's, 50in5: Breakthrough Goal

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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