Systemic Sclerosis
Systemic Sclerosis (Systemic Scleroderma) is a rare disease which results in the hardening of the connective tissues in the body as well as the skin. It can affect the lungs, heart, gastrointestinal tract, esophagus, kidneys, and other organs. This hardening causes the organs to not function as they should.
The Scleroderma Foundation estimates that approximately 300,000 people in the United States have the disease. The condition typically affects females more often than males (at a rate of 4 to 1). Most patients are between the ages of 25 and 55 when they receive their diagnosis.
Unfortunately, there is currently no cure for the disease. Treatment focuses on controlling and minimizing the symptoms caused by the condition.
Stampede Scleroderma
Stampede Scleroderma is an event hosted by the Scleroderma Foundation’s Michigan chapter. Its aim is to raise awareness for the disease as well as funds for research.
This was actually the 40th year the Michigan chapter has hosted this particular event. It included a 5K run as well as a 1 mile run and 1 mile walk. The event took place at the Detroit Zoo on June 2, 2019.
Over 1,100 people attended the event this year. The goal was to raise 130,000 dollars, and the Foundation proudly surpassed their goal. But in addition to the financial benefits of this event, patients, families, and caregivers, were able to find connection with one another and a sense of community with those going through the same thing. For some, the event is also a way to honor loved ones who have sadly passed away from the disease.
Participant Testimonies
Victoria Thompson’s grandmother passed away from systemic sclerosis after a 30 year battle. Thompson attended her first event in 2017, the year her grandmother passed away. In 2018 she then participated as a team leader. This year, she served in the same position. Over the last three years, she has raised over 500 dollars with her team.
Angela Harris and Nicole Johnson are sisters who are both diagnosed with systemic sclerosis. Angela’s diagnosis came first, after months of unexplained symptoms and unanswered questions. Three years following Angela’s official diagnosis came Nicole’s and while the sisters have most certainly had their share of struggles, they were both all smiles during this community-centered event.
Larry Malice attended the event with nine of his family members. They attended in honor of Larry’s wife Connie who passed away from the condition in 2014. Their son, Larry III, says he’s grateful for the time he got to spend with his mother who was first only given five years to live. Connie miraculously lived 17 years post diagnosis. Larry III says-
“It could’ve easily been the opposite way. I would’ve been 8 years old and never known her if she had passed way.”
So far, Malice’s team has raised over 30,000 dollars through the event. The family is grateful for the opportunity to keep the memory of Connie alive while raising money for research. .
You can read more about this event and the impact it had on participants here.
