Congratulations to our 2011 Team Sjögren’s members who completed the Nashville Country Music Marathon and Half Marathon on April 30th.

Team Sjogren's 2011

This year’s team was our biggest ever with 24 runners raising over $70,000 for the fight against Sjögren’s. The team included daughters, husbands, sons and friends of Sjögren’s patients as well as a few patients themselves. They were victorious as they crossed the finish line after months of training. The team spanned in age from 18 to 67 and represented all parts of the country!

2011 Team Sjögren’s
Marathoners
 
 Penny Anderson
 Juliann Bannon
 Rob Bannon
 Kirk Beckendorf
 Gia Casale
 Mabel Chan
 Jane Clow
 Julie Conquest
 Nancy DeFurio
 Ken Economou
 Anne Economou
 Kalla Ford
 Lauren France
 Dan Fuoco
 Donna Gotshall
 Kim Gross
 Susan Hines
 Stacey Mize
 Anne Marie Pelletier
 Eric Pratt
 Steven Taylor
 Cathy Taylor
 Hannah Yu
 Jay Do Yu

Many of our members signed up to be a part of Team Sjögren’s as a way to give back and help fight this serious, chronic disease. Their journey leading up to the race was inspiring, challenging and rewarding, all at the same time. Seeing all of our runners make it across the finish line, and knowing everything they had been through in their training, it really was an amazing day!

This year’s team had 10 runners in the full marathon (26.2 miles), including our very own CEO, Steven Taylor, and 14 others in the half marathon (13.1 miles). All 24 runners finished the event and the SSF is so proud to have had them represent us at this year’s Nashville Country Music Marathon.

As difficult as the training and the race were, each runner knows the real challenge is living with Sjögren’s. That is what motivated each Team Sjögren’s member to step up to train while raising a minimum of $2,600 for the SSF. All of our runners had a different story to tell, from being patients themselves or having a loved one with Sjögren’s. In the days before the race as they gathered in Nashville, Team Sjögren’s members enjoyed sharing their tales of the many training miles. And during the race they all were proud to answer the question they received from so many other runners: “What is Team Sjögren’s?” Most inspiring was knowing how debilitating this disease can be and yet seeing 10 patients themselves out there running among the competitors.

So when the sun set in Nashville on April 30th, there were 24 Team Sjögren’s runners proud of accomplishing what they set out to do – officially being able to call themselves “marathoners” and, most importantly, having run and crossed the finish line as they represented Sjögren’s patients worldwide!

Every month we post new Patient Education Sheets to the “Brochures & Resource Sheets” section of our website.  Check them out and learn new coping techniques for Sjögren’s.

Click Here to check out the Brochures & Resource Sheets we offer!

Baltimore Support Group Leader Eva Plude recently testified on behalf of the Sjögren’s Syndrome Foundation in front of the Social Security Administration's Compassionate Allowances Outreach Hearing on Autoimmune Diseases.

Eva did a wonderful job detailing her struggle to be diagnosed, the difficulties of living with Sjögren’s as well as how disabling the disease can be.

Her written testimony also was submitted to the Social Security Administration (SSA) as part of their extensive consideration of autoimmune diseases needing "Compassionate Allowances" for Social Security Disability, and the SSA copied and distributed her testimony to attendees at the hearing.

Eva began her testimony by explaining that, although she was first diagnosed with Sjögren’s in 1997, her story actually began 16 years earlier when she first noticed dryness symptoms throughout her whole body:

I first noticed multiple occasions of dry, gritty-feeling, very red eyes; dry, bleeding nose; dry, cotton-like mouth and painful bleeding mouth sores; dry skin and extreme dry vaginal area, causing bleeding during intercourse with my husband and just walking. I suffered countless urinary tract infections.  I was thirsty all the time and had to drink water, even throughout the night. Also, my energy would come and go.  I had always been energetic, but it seems that suddenly, I could go “like a house a-fire” one day and “crash” the next, to use my husband’s terms.  There were times that I could not raise my arms to wash my hair or walk upstairs due to weakness and fatigue.  In 1989, I fell from a foot stool and broke both wrists, tailbone and neckbone.  There was no evidence of osteoporosis.  A few years later, I was walking and stepped on a manhole cover and broke my ankle.  Again, there was no evidence of osteoporosis. I was on no medication. I was not a diabetic. Later I realized this was due to neuropathies caused by Sjögren’s where I couldn’t feel the ground beneath my feet.

In her testimony, Eva explained how she went to numerous doctors for each symptom, but none of them – from her dentist to her eye doctor to her gynecologist to her primary care physician – put her systemic issues together as Sjögren’s. All blamed something else for each symptom they saw.

It was almost through luck that she was eventually able to be diagnosed. A change in insurance caused her to find a new gynecologist who started to put the symptoms together. By coincidence, she found out one of her clients was also recently diagnosed with Sjögren’s and recommended a rheumatologist with knowledge about the disease.

From there Eva received an official diagnosis and started assembling a team of doctors who were familiar with Sjögren’s. Eva finally started to receive the care that she needed. It only took 16 years.

Eva went on to discuss her involvement with the Sjögren’s Syndrome Foundation as a Support Group Leader and detailed several stories of members she has known over the years who have struggled in so many ways to live with this disease.

Other resources:

Become a Sjögren's Ambassador!
Help make a difference

Over four million Americans have Sjögren's yet less than one million have been diagnosed! Help the Sjögren's Syndrome Foundation raise awareness in local communities all over the country by becoming an Awareness Ambassador.

If you are interested in learning more about this exciting program, contact us today and add your voice and donate your time to our awareness campaign!

Please contact Kathy Ivory at 800-475-6473 ext. 213 or kivory@sjogrens.org.