Rare disease strengthens woman’s resolve
Condition turns her focus to advocacy
Granada resident Jennifer Trednick became a member of the rare disease community almost four years ago when she was diagnosed with Stiff Person Syndrome (SPS), an “orphan” illness affecting less than one person per million.
Friend and mentor Debbie Richardson, left, has lived with Stiff Person Syndrome for 25 years.
Trednick’s neurological issues began at age 40 in 2009. Her symptoms included an intermittent tremor, numbness, stiffening of the muscles, and an exaggerated startle reflex in response to unexpected stimuli. After cycling through countless neurologists over what seemed to be an endless journey, Trednick was thankful to be diagnosed locally within 18 months.
Due to the rarity of SPS, Jennifer and her husband Mark traveled to Houston, Texas, to be evaluated by Dr. Joseph Jankovic at Baylor College of Medicine. Jankovic is considered one of the nation’s leading neurologists in the treatment of Stiff Person Syndrome and confirmed Trednick’s diagnosis.
Stiff Person Syndrome affects the central nervous system and progresses with severe muscle rigidity in the spine and lower extremities, explained Trednick. Chronic pain often leading to impaired mobility, muscle spasms, and an exaggerated posture are common with SPS because few muscles are spared. Individuals living with SPS often have other auto-immune disorders. Trednick has also been living with Type 1 Diabetes (T1D) for 33 years.
“I’m thankful for my former pharmaceutical training and career with Pfizer as a neurology and psychiatry specialty representative, which I believe led to the early diagnosis. The average time to diagnose SPS is seven to 12 years,” said Trednick. “Despite physicians’ dismissive and conflicting viewpoints, I knew that something was wrong with me as the neurological symptoms, specifically pain and stiffness, continued to worsen. I refused to give up and continued to press for answers at each appointment.”
Advocate for others
The mother of two teenagers and owner of an interior decorating business, Joujou Inc., Trednick speaks openly about life with SPS and is involved in Global Genes, an organization that advocates for rare diseases and promotes awareness for earlier diagnoses.
Jennifer Medley has also been affected by a rare disease, when her son Jake lost his battle with Batten Disease one year ago this month.
Every February 28th is World Rare Disease Day (WRDD), leading in to March, which is recognized as Rare Disease Month. Trednick hosted a gathering of 65 people in her home on WRDD, where a proclamation by Mayor Alvin Brown recognizing World Rare Disease Day in Jacksonville was hand-delivered to the celebration.
“Although I live with a rare disease that affects less than 350 people in the United States, I am not alone because Global Genes is one of the leading rare disease patient advocacy organizations in the world. This non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.”
Despite living with both SPS and T1D, Trednick remains hopeful and lives an active life filled with family, faith, friends and her design business. She also volunteers and is a Board Member of the North Florida Chapter of JDRF, the Juvenile Diabetes Research Foundation.
“I appear healthy, so one may not guess that I have SPS, take 25 pills per day and undergo IVIG [intravenous immunoglobulin] treatments for two consecutive days every three weeks,” said Trednick.
“Illnesses do not define me as a person, but give me an inner strength and voice to bring awareness in hopes to help others who are facing unanswered medical issues get diagnosed sooner,” she continued. “I am blessed and forever thankful to Debbie Richardson, my friend and mentor, who I can call any time day or night when unknown SPS issues arise.”
By Kate A. Hallock
Resident Community News
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