Farmington resident Sheri Hicks, center, is all smiles during a check presentation to the University of Michigan Division of Rheumatology Scleroderma Program Nov. 21 at the school.

Farmington resident Sheri Hicks, center, is all smiles during a check presentation to the University of Michigan Division of Rheumatology Scleroderma Program Nov. 21 at the school.

Photo provided by Sheri Hicks


Farmington woman raises awareness, funds for scleroderma

By: Sherri Kolade | Farmington Press | Published December 13, 2017

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FARMINGTON — For Farmington resident Sheri Hicks, sometimes taking a shower is too much to bear.

With ulcerations covering her fingers, even washing her hair can be a difficult task.

Hicks, 45, has the autoimmune disease scleroderma, which is a chronic connective tissue disease that is typically classified as an autoimmune rheumatic disease, according to www.scleroderma.org. According to the site, hardening of the skin is one of the most visible occurrences of the disease.

According to a press release, painful ulcers on her fingertips were the first indication of a problem for Hicks.

The disease also impacts internal organs and can disfigure and incapacitate patients, the release states, possibly even becoming fatal.  

Hicks’ fight against scleroderma impacts her family too. Her 75-year-old father, Ron Harworth, was diagnosed with stage 3 kidney disease as a complication of scleroderma. 

She said in the release that medical professionals say that scleroderma is not genetic, but with all of the people she knows who have it, they all have a family member who shares the disease.

“I am not a medical professional or a researcher, but in my heart I think that the research is just not there yet.  I fear for my 11-year-old son and would like to see a cure for his generation,” Hicks said in the release.

Hicks said the disease sometimes causes low energy and depression.

“There are good days and bad days,” she said during a recent phone interview, adding that she tries to maintain her boundaries and reserve her energy when she can.

But despite the daily challenges she has faced since being diagnosed in 2007 — after her son was born — she has made it her mission to raise funds for scleroderma research one dollar at a time.

About 300,000 people in the United States are impacted by the so-called “orphan disease” — named that because it is not a cancerous or cardiovascular problem.

According to the press release, there is no Food and Drug Administration-approved treatment, and research funding can be hard to come by. 

Hicks was treated for over five years at the University of Michigan Scleroderma Clinic, where research is done under the guidance of Dr. Dinesh Khanna, and Hicks said the clinic gives her reason to believe that the disease could possibly be cured.

From that thread of hope was spun the idea for “Kicks for Hicks,” a grass-roots fundraiser campaign. Hicks said in the press release that a compound in the U-M research lab could provide new treatment to potentially “turn the scleroderma switch off.”

“I was instantly motivated to help raise funds for a cause that not only affects me, but my loved ones and friends who suffer daily,” Hicks said in the release.

In 2013, Hicks’ family and friends raised $10,000 for the Scleroderma Cure Fund through a spaghetti dinner and silent auction. In October, they raised $16,000 through a fundraiser at Orchard United Methodist Church.

Lori Hirshman, associate director of development and internal medicine at the University of Michigan’s Michigan Medicine Office of Development, said in an email that the funds help.

“The funds support research to understand the cause of scleroderma and develop new effective medications for treatment of scleroderma,” she said via email. “As one of the country’s leaders in this field, the University of Michigan’s program is committed to the highest-quality patient care, education of our medical students, and ongoing intensive research to improve early diagnosis and design more effective treatments.”

Hicks and others presented the $16,000 donation check Nov. 21 at the University of Michigan.

“It made me feel like a superstar,” she said, adding that the event was heartwarming.

She said that she and her team have helped put together a peer mentoring program through the U-M scleroderma program.

“(They) match you up with someone who has gone through the process before,” she said, adding that the initial diagnosis can be a scary time, especially when reading about it online. “(You) think, ‘Wow, I’m going to die from this.’ That is not what we want patients to hear. We want them to hear all the hope that there is.”

She said about five or six peer mentors are on board currently in the program.

Jody Fisher, program manager at the University of Michigan Division of Rheumatology Scleroderma Program, said in an email that Khanna’s peer mentoring program helps serve his patients’ complex emotional and self-management needs.

“My first task when hired on as scleroderma program manager was to make his vision a reality,” she said, adding that all of the mentors are trained in privacy regulations and how to counsel patients.

“Including honing their listening skills and learning how to serve our patients on their terms,” she said. “For example, scleroderma patients suffer from extreme fatigue, but may still very much need the support of a mentor (who is also suffering from extreme fatigue).”

She said that to address this, the program encourages its mentors to communicate in the way that their partner prefers, whether that is via email, text or telephone call.

Hicks agreed.

“Some of the patients don’t feel comfortable yet with the disease and meeting face to face,” she said.

She said the scleroderma community is all about connections and support. She said her mother was talking with a hairstylist about a past fundraising event when a man overheard the conversation and told them about his 24-year-old daughter in Chicago who had just been diagnosed.

“She is really scared, and my mom gave her my number and I was able to contact her,” Hicks said.

She said people should recognize the disease for what it is and maybe reach out to someone who has it.

“Reach out to patients who are suffering and would like to talk to someone else who is managing the disease — that is really the important thing to me,” she said.

For more information, go to Hicks’ website, www.stompscleroderma.com.

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