Below you will find stories from patients (and also their family's stories) about their diagnosis journey, what it's like to live with scleroderma, and their experience with the Scleroderma Program at Michigan Medicine.
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.
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.”
I’m Carol and I “added” scleroderma to my life in 2016. Pre-scleroderma, I was a middle school teacher and parent of two twenty-something sons. Now, two years into the disease, I am an elementary school volunteer and still a mom to those two twenty-somethings.
As a teacher I had spent years trying to motivate special ed kids to do things that were challenging for them to do: communicate, interact, problem solve, advocate for themselves, ask for support. Once diagnosed, I quickly learned that I needed to turn these specific skills on myself. I am still amused when I hear my “teacher voice” in my own home encouraging me to hang in there or be patient with myself or to work harder. I’m curious what my report card on myself will say!
I was very fortunate to be diagnosed quickly when the skin on my hands began to harden. I was immediately welcomed warmly into the arms of the Michigan Medicine Scleroderma Program. With the quick progression of my symptoms over the next weeks, I felt out of control in many ways. Dr. Khanna, the staff at the Scleroderma Clinic, as well as my new Occupational Therapist and Physical Therapist, gave me a strong foundation of expertise and encouragement as I began to negotiate the disease.
When I first heard the word scleroderma and began to learn about the disease, I felt I had suddenly landed in a distant country far away from anything I knew. I was in unfamiliar territory, not speaking the language or understanding the customs of this new place. Folks at the Scleroderma Program became my instant tour guides. They helped me learn the language and empowered me to find my way.
As I look back, life with scleroderma wasn’t like landing in a foreign country at all, but was the discovery of a new piece of myself that I had to embrace and navigate. It has been a bumpy road at times, but I was never alone on this journey. Scleroderma has provided me with an opportunity to see myself and the world differently, to meet amazing people working incredibly hard to cure this disease, and to be part of a community of folks who care for each other.
My name is Donna and I want to thank the Scleroderma Program for creating this platform for sharing our stories. I wear many hats: I am a wife, mother of three 20 something boys, a physician scientist, and almost two years ago I became a Scleroderma patient. I was fortunate to be diagnosed early in the disease process. Within four months of experiencing a confusing combination of constantly changing symptoms, my rheumatologist ordered the definitive test. When I saw the results in the patient portal I panicked. All I could think of was the worst-case scenario, the one case I had seen during my residency training. What I didn’t know was how much progress had been made since 1990. What I was about to learn was that Dr. Khanna and his team at the University of Michigan (U-M) are at the forefront of that progress. But that comes a little later in the story.
What happened next was unexpected. I live in a city with 6 major academic medical centers and yet when my husband and I started looking for a site with deep clinical expertise and a cutting-edge research program we could not find one locally. After searching the internet for a place to go, Michigan emerged as one of the top programs in the country. When my husband called the U-M Scleroderma Program, he got a call back from Dr. Khanna within hours. That responsiveness, and the subsequent conversation, led us to fly to U-M. It was the most important decision we made during this very difficult time when the disease was rapidly progressing. The outstanding OT department (which gave me the exercise program I was missing), the opportunity to speak with other patients, the caring and state-of-the art clinical care, and the impressive research program and faculty, gave me the confidence that I might emerge from this with as close to my previous life as possible. Dr. Khanna’s vast clinical experience, combined with his active engagement in his own research and the studies going on nationally and internationally, came together to create a treatment regimen that changed the trajectory of my disease. With a rare disease you want to be in the best place possible, and for me and my family, that is U-M.
The good news is that I have started to go into remission. As my body has started to heal it has become possible to focus on my head. That means including podcasts by Tara Brach, an expert in meditation and mindfulness, who is teaching me (only one of the many lessons) that being grateful lifts the spirit and is one of the keys to a happy life. So I will end my story by sharing what I continue to be grateful for: my devoted husband and wonderful children, being able to continue to work at a job I love, the OT department (particular shout out to Dr. Carole Dodge), U-M Scleroderma patients who are so generous with their time, and finally, Dr. Khanna for gaining my trust by demonstrating both a commitment to making me, his patient, better, and his commitment (or should I say calling) to finding the root cause of this disease and its cure.
Hi, my name is Mackenzie. I have been a patient of the Scleroderma Program at Michigan Medicine since February 2017. I am a mom to two beautiful daughters, who keep me pretty busy most days, as well as working a full-time job!
My journey started in February 2016 when I began experiencing migraines and high blood pressure. My symptoms began to increase despite multiple weekly visits to my primary care doctor to help control the high blood pressure as well as a pneumonia diagnosis.
My hands were changing colors and swelling. Also, I had a difficult time catching my breath and walking up stairs, inclines, or a far distance. After several more appointments and different doctors, I finally received an answer on August 18, 2016, when a local rheumatologist diagnosed me with diffused scleroderma. This doctor was not specialized in this disease and could not slow down my fast progressing disease, so he referred me to Michigan Medicine.
When I saw Dr. Khanna in February 2017, he took the time to ensure all of my questions were answered. It was terrific to have a doctor want to achieve what I sought after with my quality of life. He always stayed positive and had a plan of what was next because hearing a previous doctor say there is nothing we can do is devastating.
At the next appointment, we discussed a stem cell transplant. Dr. Khanna knew I wanted improvements in my quality of life and was offering options to benefit me potentially. In July 2017, I underwent a stem cell transplant at the U of M hospital. The best decision for me! This journey has not been an easy one; however, I continue to stay positive especially knowing I have a fantastic support team behind me at U of M!
Mackenzie's Daughter - Ariana
Hi, my name is Ariana, and my mom is a patient at the University of Michigan Program. I have a fluffy cat, that is the sweetest little bean. I am an alumni from Michigan State University, and love baking desserts with my family.
My mom’s diagnosis was an extensive journey. She went to several different doctors and none of them had an answer for us. At one point, they thought she was allergic to something, so they sent us to an allergist. Thankfully, this doctor knew that my mom was not allergic to anything and started to think about out of the box diagnoses that may explain her symptoms. An autoimmune disease was one of the solutions he came up with. This led us to seeing a rheumatologist. At this point, we assumed that my mom either had scleroderma or lupus.
When the rheumatologist said she had scleroderma, we were still flabbergasted. Scleroderma seemed like this foreign thing that not many people knew about since it was so rare. I didn’t feel comforted until my mom was referred to U of M to see Dr. Khanna. The medical team is extremely knowledgeable, and helped ease our concerns, while also confirming that they would be here to help my mom every step of the way through her healing process.
The medical team at U of M has always gone above and beyond my expectations for helping my mom. During her bone marrow transplant, everyone was exceedingly helpful and friendly. When my sister and I would be visiting, the nurses would say, “Oh, you must be Ariana and Brecinda, your mom talks about you all the time! It’s so nice to meet you!” It was comforting to know that they actually listened to my mom and cared about the things she had to say, not just nodding along and pretending to listen to her while checking in on her. The U of M Scleroderma Program has done an exceptional job at informing us of my mom’s medical treatment plan and assuring that all of our questions have been answered.
Mackenzie's Mother - Karen
I, Karen, am the average person who blends in with the various faces on the street and my daughter is a scleroderma patient at U of M. I allocate my time between life, husband, children, my dogs, and work. I make ‘to do’ lists and usually carry tasks from one list to the next, and I am ok with it. I appreciate everything about nature and strive to spend as much time as possible to experience it, and I always feel like I receive far more than I seek. I strive to be a better person tomorrow than I am today.
My Daughter’s and My Story
A couple of years ago, our family celebrated Christmas with food in abundance and normal activities. Within a couple of months, my daughter was struggling to breathe normally after walking about 100 feet and ended up that evening at the Med Center. She was given several prescriptions to lower her blood pressure and told to see her Primary Physician the next day. She, then, bounced from one doctor appointment to another hoping for an answer and the progression of her disease was flourishing.
Finally a local physician, a rheumatologist, initially diagnosed her with diffuse scleroderma and started her on a drug regimen. He concluded after many drugs changes, and he was relocating, you should go to U of M. And so we did. The concept of being treated by U of M was reassuring, after all, they are in the top 5 in the Nation best Hospitals and considered one of the principal research hospitals.
Fortunately, Dr. Khanna (with a confident and caring professional disposition) armed with my daughter’s medical history, and his entourage walked in the door and immediately I felt a sense of relief. A few questions, the first skin score, a couple of tests and visual observation and the diagnosis of diffuse systemic scleroderma. He continued with an explanation of precisely what it was and continually asking if we had any questions and answering them until we understood. Dr. Khanna immediately followed the plan options available, the expected progression of each, and answering our questions. And amended the drugs and ordered all the tests that were necessary.
For the first time, I felt assured that she was going to be treated.
Believe It Is Possible
An entire atmosphere of dedication, to the patient, to each other, and to research. When my daughter walked into U of M, her scleroderma was well developed, and she had multiple other diseases that had manifested. In spite of the size of the hospital and campus, she was always ensured patient safety and the highest quality of care. Every appointment, she was given as much time as she needed.
I observed my daughter evolve into a more beautiful, positive, encouraging, grateful and confident person with determination to be herself as a result of the support of family and the U of M Scleroderma Program.
When going into battle, if you are armed with knowledge and communication, it is likely you will defeat your adversary who is dependent on their large numbers and strength.
Hi, my name is Mary and I'm a patient at the Michigan Medicine Scleroderma Program. I'm a wife and a mom to one four-legged furry baby. I love all things technical and design websites and graphics for fun and for a living!
My journey to U of M began in January 2011. My fingers began swelling. Soon after, my ankles and feet swelled so much that I had to buy new shoes! Then my knees and elbows became stiff and painful.
I began going to my primary care physician who had no answers. I was given diuretics to help with water retention. I returned with worse symptoms and was told that I had Carpel Tunnel in my hands from working at the computer my entire career. I was given a prescription for hand splints.
By the time July rolled around, I was referred to a rheumatologist who sent me through more tests, x-rays, and scans. Nothing. He told me there was nothing he could do for me and to come back in six months.
The funny and sad part of this story is the rheumatologist had a poster from the Scleroderma Foundation in his exam room. It featured a woman with scleroderma and said "Scleroderma Awareness and Support". I had no idea what that was and thought "That can't be me".
In August, I found another rheumatologist who also sent me for more tests but couldn't find anything wrong. I was experiencing severe symptoms and was having trouble with day-to-day activities. This doctor said that she wasn't sure and I could just wait it out, or I could try the Michigan Medicine Scleroderma Program because my skin had a shiny appearance.
In September 2011, I was fortunate enough to see Dr. Khanna when I had my appointment at the Scleroderma Program. I had written down my account of symptoms and after reciting my list he said "Yes, you have scleroderma." No tests needed for an expert, he knew right off the bat.
Of course, the subsequent months and years have been full of tests, monitoring, and medication, but that day I walked away with an answer and a plan.
It hasn't been an easy journey but the experts at the program have always taken great care of me. I trust them completely. They work tirelessly for a cure and to care for each and every patient. They saved my life.
While Sheri Hicks was living in Tucson, Arizona, and tending to her 1-year-old son, she began to notice painful ulcers on her fingertips. As the ulcers persisted, they became unbearable. Little did Sheri know, it would be another long and painful year before she got any answers.
In 2007, doctors were finally able to link Sheri’s painful swollen fingers to scleroderma, a chronic connective tissue disease that hardens the skin. It began to affect every part of Sheri’s life.
After reaching a point of exhaustion, Sheri and her husband relocated to Michigan, uniting her with supportive family and friends. Today, she is being treated by physicians in the Michigan Medicine Scleroderma Program, directed by Dinesh Khanna, MD, MSc, in the Department of Internal Medicine. It is here Sheri found a reason to believe in a cure. As one of the top treatment facilities in the country, the team in Khanna’s scleroderma research lab has discovered a compound that could provide an effective new treatment. However, more funding and research is needed to make this treatment a reality. Learning of the potential for a cure motivated Sheri to start fundraising for research. However, due to her condition, fundraising is not always an easy task.
Yet, Sheri won’t let her condition slow her down. As doctors are on the brink of a breakthrough for scleroderma, Sheri promises she will not stop fighting for a cure through her fundraising efforts.
“When you feel passionate about something, you have to just jump in. You have to start somewhere and just do it. You have to stay positive and focus on exactly what you want.”
Hello, my name is Sondra Huddleston. I am single, have no children, and I finally accepted a medical retirement this year (2018) from General Motors Corporation. I enjoy spending time with my family, especially the little ones. I have an outstanding support system with my family and friends.
In early 2012, unbeknownst to me, my life began heading towards scleroderma. My first physical signs were in my palms. Both of my palms were bright red for a few days then white specks would appear. Or one palm would be a different color than the other. Then, I noticed my fingers tips were turning purple and blue when I was in different temperatures. I started seeing changes in my fingers. My knuckles were looking swollen, and my fingers were curving and seemed tight at times.
I started taking pictures of my hands and fingers to show them to my Primary Doctor. He began watching my hands and fingers over several months. By the end of summer, my PCP referred me to a rheumatologist. After several appointments, which included X-rays and lab testing, my diagnosis was raynaud's disease.
The changes in my hands/fingers were becoming aggressive. My nail beds were white and the skin of my fingers were tightening. I couldn't grip anything. I also noticed that the skin on my hands had no elasticity and it was spreading to my arms. My lips were tightening which changed my speech pattern. Ultimately, the fatigue set in.
I thought, "do I need an adjustment to my thyroid medication?" By the third visit to the rheumatologist she said, "I believe you have scleroderma." "Sclerod... what?" She immediately referred me to the University of Michigan Hospital.
After my series of lab tests, heart, lungs, and GI tests, I was officially diagnosed as having systemic scleroderma. The diagnosis was the beginning of my life as a scleroderma patient, what I call my New Norm!
Unfortunately, in late June 2013, I became seriously ill and was diagnosed with end-stage renal disease. After being hospitalized for one month, I was on dialysis.
On July 7, 2016, I gained my independence from dialysis after being blessed to receive a kidney transplant. My health made a significant turnaround. My medicine is working quite well as my symptoms have calmed down and have not advanced. My skin elasticity returned to my hands, arms, and in my lips. My fatigue has lessened. My fingers still aren't straight, but I have faith, that in time they will return to normal. I believe that through God all things are possible.
I am genuinely grateful to Michigan Medicine and to Dr. Khanna, the Scleroderma Clinic staff for providing excellent research, services, and patient care to me. My life depends on God's grace enabling His work through them. I am determined to return to my fun, outgoing, personality and enjoy my life again, with my New Norm.
Scleroderma is an unpredictable, chronic disease that can lead to life-threatening complications. An autoimmune condition, it involves the buildup of scar-like tissue in the skin and other organs, such as the heart and lungs, and can make movement and breathing difficult. It is estimated that about 300,000 people in the United States have the disease.
Our scientists are looking for answers on all fronts. We are studying the mechanisms of blood vessel injury, the biology of lung scarring, immune system and inflammatory cells as mediators of tissue injury, and much more. We also are conducting nearly three dozen clinical trials - testing medications, identifying biomarkers for complications of the disease, and understanding pain and depression. Moreover, we are exploring the ways in which scleroderma accelerates the aging process and leads to frailty and mortality.
The Michigan Medicine Scleroderma Program is committed to leading the way in treatment, in research, and in training the physicians and scientists who will continue to push this fight forward. With your support, we can accelerate health care toward a better future.
Support Our Work
To make a gift to support our research, please visit the Scleroderma Cure Fund.