Living with Ehlers-Danlos Syndrome (EDS), a progressive degenerative connective tissue disorder characterized by joint hypermobility, skin extensibility, and tissue fragility, Ellen knew from childhood that she was unusually flexible and highly mobile, but thought nothing of it. She first suffered problems as a master swimmer, when she began to have excessive shoulder pain from overstretching her ligaments. To ease the pain, she would stop swimming for a week. She was once given a steroid shot, but this gave her horrific pain and made her unable to raise her arm for a month. Ellen now knows this course of treatment was the worst thing for EDS, as steroids break down collagen even further.
In 2002, Ellen underwent surgery for a dropped bladder. When her bladder dropped again two years later, her surgeon referred her to a geneticist for testing, and Ellen was diagnosed with EDS. Although she intuitively knew the diagnosis was right, she was shocked and sought a second and third opinion before she finally accepted it.
Classical EDS affects one in 20,000 to 40,000 people. Ellen’s case is severe, and has worsened in the past year. She has learned to become extremely cautious in public, as the slightest touch, bump, squeeze or hug can easily dislodge her joints. Since her diagnosis, she has undergone eighteen major surgeries to help her maintain mobility. Her pain significantly increases throughout the day, and on bad days her mind becomes foggy. With compromised oxygen levels reaching as low as forty-five percent, Ellen relies on a BiPAP S/T, or home respirator, to keep her oxygen levels within a normal range.
Maggie, Ellen’s black Labrador service dog, is her protector. Maggie helps stabilize Ellen so she can stand and walk, and brings her medicine from the refrigerator. Just six days after receiving Maggie, Ellen stopped breathing in the middle of the night, and Maggie woke her, saving her life. Maggie will do anything she can to keep Ellen safe.
Ellen has had to stop teaching, swimming, and coaching. She can no longer paint the house or help her husband with small home improvement projects, a pastime she enjoyed. To the outside world it appears that EDS robbed Ellen of her life, and yet Ellen would disagree. She recognizes that her life has shifted course, but she refuses to become emotionally paralyzed. She and her husband, Stu, live by the motto that you must enjoy what you have while you have it. She has passion for life and continues to live with hope and love.
Ellen is proactive in her therapy program. She follows an exercise regime on her bed to strengthen core muscles, and uses pool therapy to jog. Having a rare form of celiac sprue, a chronic digestive tract disease that interferes with the digestion and absorption of nutrients from food, she follows a strict diet that prohibits dairy, soy, and gluten.
Although Ellen has had severe reactions to most medications, she has found pain relief from medical marijuana, which is legal in her home state of Rhode Island. She is proud of her state for passing legislation enabling its distribution, and is an active supporter of The Gifting Program, which allows people to share limited amounts with others.
Ellen works with the American Pain Foundation (APF) as an advocate leader and for the Arthritis Foundation as a state ambassador. With the APF, she received a pain proclamation from the governor of Rhode Island. Another organization that is particularly close to her heart is the Ehlers-Danlos Syndrome Network CARES Foundation, a group dedicated to creating awareness and funding research.
While working with these organizations gives Ellen a sense of purpose and meaning in her suffering, she finds the greatest fulfillment in simply connecting with other EDS patients. Ellen understands the speculation and criticism they experience, and spends time encouraging them to hold on to hope and be courageous. In essence, Ellen is still a compassionate educator. She teaches people to become proactive and to be their own best advocate. She urges others to find their own best answers, believing that if something cannot hurt us, it is worth trying to fix us.
With the support of her four sons, the devotion of Maggie, and the unconditional love of her husband, Ellen moves forward. She lives each moment as it comes and is happy to be alive.
“I don’t want to be remembered as someone who pitied herself; I want to be remembered as person who tried, a person who made a difference, lived life, and found joy.”
Ehlers-Danlos National Foundation
Ehler-Danlos Syndrome Network C.A.R.E.S., Inc.