Patient Story Spotlight

Beverly and Mike
Beverly and Mike

Beverly lives in Michigan with her husband Mike of 44 years and has five children. Beverly loves to play the piano (though her hand contractures are preventing that currently) and to travel internationally. She enjoys spending extended time in France and tries to learn and improve her French when visiting. 

After being diagnosed with diffuse scleroderma, she began a search online for a clinical trial. Here, Beverly tells her story of being diagnosed with scleroderma and joining a clinical trial.
 

Diagnosis Led Beverly to Both Giving and Receiving

In January 2018, Beverly started to notice symptoms of Raynaud’s. Later that spring, while she was visiting Paris and Greece, Beverly began to see her fingers were swelling. After returning home from her trip, her doctor diagnosed her with CREST syndrome (now called systemic sclerosis with limited scleroderma).

Beverly accepted the diagnosis of CREST until she saw a colleague of her rheumatologist, who happened to be on medical leave. The new rheumatologist thought she should have some different tests done, just in case. It was those various tests from a chance meeting of a colleague that changed her diagnosis to diffuse systemic sclerosis. Due to the nature of the disease, she was given advice to look online for clinical trials. 

After visiting ClinicalTrials.gov, she found the REACH study, which involves rehabilitation strategies to improve arm function in patients with scleroderma. Within a week, Beverly was at her initial visits with both occupational therapy and Dr. Dinesh Khanna, the Director of the Michigan Medicine Scleroderma Program

For Beverly, deciding to participate in a clinical trial was easy. After the screening process, she was found to be the perfect candidate for the trial. Beverly was willing to do whatever was needed to feel better, and she knew that by participating in a clinical trial, she would receive more attention and medical care than just seeing her rheumatologist every six months. 

Also, Beverly believes systemic sclerosis is a “ridiculously confusing disease” and is “enthusiastic about giving back” as well as receiving personal benefit. 

Clinical Trial Experience

Beverly has been pleased with her clinical trial experience at Michigan Medicine. The study team makes it fun and upbeat. Her study coordinator calls her often to check in on her, she is seen more frequently, and knows the team is just a phone call away. 

Beverly recommends that anyone considering participating in any clinical trial read the entire consent form. She found it very reassuring that it was easy to withdraw from the study at any time if she wanted to. 

Especially for scleroderma patients, Beverly suggests watching the following video from the 2017 Scleroderma Foundation annual conference: Clinical Trials: Why Are They Important and Why Should I Participate? Dinesh Khanna, MD, MS.

Final Thoughts

Beverly and Friends
Beverly with her family

Regarding scleroderma and the Scleroderma Program at Michigan Medicine, Beverly says, “Scleroderma changes your life, but it doesn’t have to be for the worst. I am starting to see the advantages. I couldn’t go around looking miserable all the time and that’s what made me decide to start being proactive."

Beverly stated, “I love having a network. It is nice to share your experience for both patients and caregivers.

For more Michigan Medicine scleroderma stories and to support our work, visit us at Michigan Medicine Rheumatology Scleroderma Stories.

To make a gift to the Scleroderma Program, please visit the Scleroderma Cure Fund online giving page.