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Detroit Zoo event raises awareness about disease that causes skin, organs to harden

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Monday, June 03, 2019

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For months, Angela Harris did not what was happening to her body. 

While pregnant with her son, Harris suffered from swollen hands that were turning purple, and her throat was closing up on her. After going to the hospital with a low platelet count, the Detroit resident was diagnosed in January 2011 with scleroderma, a rare disease that causes the skin and connective tissues to harden and tighten. 

Three years later, Harris' sister, Nicole Johnson, too was diagnosed with scleroderma. 

While some days are tougher than others, both sisters were all smiles Sunday morning as the two of them and other family members participated in a walk dedicated to raising awareness about the disease. 

The Michigan chapter of the Scleroderma Foundation hosted its 40th annual Stampede Scleroderma event at the Detroit Zoo in Royal Oak. Attendees could choose to enter the 5K run, 1-mile run or 1-mile walk, all of which took place in a neighborhood near the zoo.

Donations from the fundraiser go toward scleroderma support, education, and research, said Laura Dyas, the executive director of Scleroderma Foundation Michigan. More than 1,100 people participated in this year's event, and has raised $121,245 of its $130,000 goal.  that needs more awareness, needs more funding, and I want to do everything I can to advance the mission." 

Victoria Thompson and her friend, Kristoffer Butler, sported lime green T-shirts with flamingos that were made specially for the walk. Thompson's grandmother died of scleroderma in 2017 after battling the disease for 30 years. Thompson participated in her first Stampede Scleroderma that year, and served as a team leader in 2018 and this year. The team consists of Butler, other friends and her mother. The Royal Oak resident said she has raised more than $500 for the cause over the past three years.

According to the Scleroderma Foundation, about 300,000 people in the U.S. suffer from the disease, with women patients outnumbering male patients about 4 to 1. The age range when diagnosed with scleroderma is usually between 25 to 55.

There are two major classifications of scleroderma: localized scleroderma and systemic sclerosisLocalized scleroderma is relatively mild, and is usually found on a few places of the skin or muscles. The internal organs are not usually affected and people affected with localized scleroderma rarely develop systemic scleroderma.

Systemic sclerosis may affect the connective tissue in various parts of the body, such as the skin, esophagus, gastrointestinal tract, lungs, kidneys, heart and other internal organs. The tissues in these areas harden, causing the parts not to function properly. 

Larry Malice of Clarkston and his family were hanging out in the Detroit Zoo parking lot waiting for the walk and run to start. All nine of them were wearing red Stampede Scleroderma T-shirts with the words "Connie's Angels" on the back. The team is named after Connie, Malice's wife who died of the disease in March 2014.

Malice's son, Larry III, said his team came up with the name "Connie's Angels" because his mother always held onto an angel doll when she went to the hospital. Doctors initially told the family Connie only had five years to live, but she ended up living for 17 years after being diagnosed. 

"We felt very fortunate that we got to know her growing up," said the 26-year-old. "It could've easily been the opposite way. I would've been 8 years old and never known her if she had passed way."

In the five years after her death, the team has raise more than $30,000 through Stampede Scleroderma. 

"It's about keeping the memory of my mom alive, and making sure we're raising money to help a great cause," Larry III said.

 

Author: Micah Walker
Source: freep
3.5
3.5 from 2 votes
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