Living with Scleroderma: Personalized Treatment, Support Makes All the Difference

July 02, 2018 6:00 AM

A Michigan Medicine patient shares her experiences with the condition, and how she is now giving back through education and support for other patients.

“I was diagnosed with diffuse scleroderma on August 18, 2016,” says Mackenzie DuBois, 41. “It’s a date that will forever be etched in my mind.”

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Scleroderma is an autoimmune rheumatic disease that creates chronic inflammation in the connective tissue. One visible symptom of the disease is hardening and contracting of the skin, which depending on the extent and severity, can put patients at higher risk of issues with internal organs.

The cause of the disease is not currently understood. And it’s a disease that’s never simple.

“I wish people knew that this disease has a mind of its own,” says DuBois, who lives in Grant, Michigan. “Each person diagnosed has different issues, which means different treatment plans are needed.”

Personalized treatment

DuBois first visited her local doctor who referred her to an allergy specialist to check for environmental allergies. The allergy specialist ordered blood work, and her antinuclear antibodies (ANA) test came back positive. Because a positive ANA test can signify that the body is attacking itself and potentially leading toward an autoimmune disease, she was referred to a local rheumatologist.

“My rheumatologist then referred me to the University of Michigan because my scleroderma was rapid-acting, and the treatment plan I was currently on was unable to slow the disease,” she says. “The disease was taking my happiness from me.”

After meeting Dinesh Khanna, M.D., professor of rheumatology and director of the University of Michigan Scleroderma Program, DuBois felt as though he understood her symptoms and how to help her better manage her disease.

“The positive environment at the U-M Scleroderma Program has been a life-changer for me,” DuBois says. “When I was referred to Dr. Khanna and his team, it truly helped me find my silver lining within this disease. I also witnessed the fight they had for me personally.”

In July 2017, DuBois underwent a stem cell transplant to help with her skin and management of scleroderma.

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“I had the transplant to see if that would reboot my immune system,” she says. She also takes an immune suppressant medication and anti-viral medication to help with the stem cell transplant, as well as medications to help with heartburn and high blood pressure.

DuBois says her personalized treatment plan already appears to be helping.

“I’ve had improvements already and am continuing to see improvements,” she says. “But it will take up to two full years to soften my skin.”

Education and mentorship

DuBois has found specific satisfaction in some of the other benefits the U-M Scleroderma Program offers to patients.

“The education aspect that the program offers to patients is great,” she says. “They want to make sure you truly understand this disease.”

Mentoring has been another highlight.

“They offer a Peer Mentor Program as an opportunity to educate and speak with other patients with a similar diagnosis,” she says. “I completed the training to be a mentor in January and enjoy working with other patients.”

DuBois emphasizes the impact the program has had on her disease management.

“Dr. Khanna builds relationships with his patients,” she says. “He understands their lifestyle to help individualize their treatment plan.”

And support doesn’t just come from the program.

“I’m a parent of two beautiful daughters that have been amazing at helping me fight this disease every day, as well as the rest of my family and friends that have been a great support system.”

Looking to the future

DuBois is optimistic about the future, especially after her stem cell transplant.

“I’m continuing to see improvements from my stem cell transplant and I will continue to hold my head high with a smile on my face while I defeat this disease,” she says. “I refuse to let it take anything else from me.”

To learn more about the U-M Scleroderma Program and schedule an appointment, please visit the program’s website or call 734-647-5900.