Sjogren's Patient Testifies in Front of the Social Security Administration

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.

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