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

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

7:00 AM

Author | Kylie Urban

"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."

LISTEN UP: Add the new Michigan Medicine News Break to your Alexa-enabled device, or subscribe to our daily audio updates on iTunesGoogle Play and Stitcher.

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.

MORE FROM MICHIGAN: Sign up for our weekly newsletter

"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.


More Articles About: Bones, Muscles & Joints Bones and Muscles and Joints (Orthopaedics) Rheumatology
Health Lab word mark overlaying blue cells
Health Lab

This article is from the Health Lab digital publication.

Media Contact Public Relations

Department of Communication at Michigan Medicine

MichMedmedia@med.umich.edu

734-764-2220

Newsletter

Get a weekly digest of medical research and innovation, straight to your inbox.

Subscribe
Featured News & Stories scientists together at computer in white coats
Health Lab
Researchers uncover new cell types involved in osteoarthritis
And the development of a new slow-release drug seeks to target them
friends hugging purple butterflies
Health Lab
Lupus: A frustrating diagnosis journey you don’t need to embark alone
Nicknamed the “invisible disease”, the autoimmune disorder comes with lifestyle changes that can be a challenging adjustment.
prescription pad
Health Lab
Reducing opioids prescribed after total knee and hip arthroplasty can be beneficial for patients and doctors
Large doses of opioids are commonly prescribed after total knee and hip arthroplasty to avoid call-ins for refills, but smaller doses can be just as effective.
Muscle fiber microscopic scleroderma fibrosis
Health Lab
Tofacitinib shows promise in scleroderma patients, researchers are optimistic for next phase of study.
Phase I/II study of a rheumatoid arthritis drug used in systemic sclerosis shows signs of efficacy and RNA technology is instrumental in the discovery
Man with glasses sitting on edge of furniture leaning, holding his shoulder.
Health Lab
Aching joints make older adults reach for many forms of pain relief – but health risks could follow
Arthritis – both osteoarthritis and rheumatoid arthritis – affects most adults over 50 and limits the activity of many. Pain drugs and supplements to ease pain can interact and cause health risks.
small intestine drawing lab notes
Health Lab
How the western diet and gut bacteria can lead to scarring, vessel damage in scleroderma
The same metabolite is linked to cardiovascular and metabolic diseases.