While great strides are being made in managing scleroderma and its complications, there is no cure. To combat this disease, the Michigan Medicine Scleroderma Program has developed a comprehensive, multidisciplinary team of clinical and research specialists from many disciplines, including rheumatology, pulmonology, cardiology, gastroenterology, infectious diseases, dermatology, physical medicine & rehabilitation, and plastic surgery - all dedicated to delivering world-class patient care and support while pioneering cutting-edge research aimed at reducing suffering, preventing death, and ultimately finding a cure for scleroderma.
Our efforts would not be possible without the generous support of outstanding individuals who share our vision and are committed to helping make that vision a reality. In the below articles, you will find profiles of several of our most distinguished benefactors, each of whom has agreed to share their stories related to dealing with scleroderma. While each of their stories is unique, all of the people featured share two very important things in common: Their lives, or the life of someone they love, have been negatively affected by scleroderma and they have decided to turn their personal experience into an opportunity to help others by supporting our critical research efforts.
Jonathan and Lisa Rye
Jonathan and Lisa Rye give $2.5 million to U-M Scleroderma Program to honor son’s progress – after 14-month quest for correct diagnosis.
“July 2004:Calvin tries to sleep a lot, takes his Zithromax and sticks to his high cholesterol diet. He tries to exercise more but it causes great pain afterwards. He takes warm baths to soothe the aching… He still has no flexibility and feels no improvement in terms of achiness. Over the past 7 months he has lost 8-10 pounds…When I massage him, I feel how hard his hands, wrists, arms, feet, ankles and lower legs are. All the tissue feels bound together.”
(An entry from an informal journal kept by Lisa Rye, during the agonizing months she and her husband Jonathan spent frantically working to determine the cause of their son Calvin’s rapidly-declining health.)
A week after Jonathan and Lisa Rye’s son, Calvin, showed them what looked like a faded bruise on his left leg, the family’s dermatologist diagnosed morphea – a usually benign skin condition.
However, a month later, when Calvin experienced aching joints and such loss of flexibility that he regretfully gave up the high school sports he loved, his pediatrician recommended he see a rheumatologist.
Embarking on a medical odyssey that is often too familiar to those (or their loved ones) who suffer from rarer or more difficult-to-diagnose conditions, the Ryes endured trips to multiple specialists, resulting in multiple diagnoses and multiple courses of treatment – yet nothing seemed to help.
Instead, as Calvin’s pain continued to increase, and the skin of his lower arms and legs grew progressively shiny over his hardening and increasingly rigid underlying bound-down tissue, the couple began keeping a journal of their son’s ever-worsening symptoms, and tirelessly searching the Internet for clues.
Fourteen months and many doctors later, some photos they discovered on the internet led the Ryes to request another biopsy. A pathologist diagnosed eosinophilic fasciitis – a rare and often quite serious condition related to scleroderma characterized by symmetric and painful inflammation and a dramatic loss of elasticity in the tissues of the arms and legs.
The Ryes were devastated by the news, but were relieved to finally have a solid diagnosis. Nonetheless, they continued their quest for answers, and remained determined in their search for more effective treatments for their son’s condition.
Lisa Rye describes the complicated series of events that followed – events that led them to the University of Michigan – first to David Olson, Ph.D., then, ultimately, to the U-M’s world-renowned scleroderma specialist James R. Seibold, M.D. – as being the result of nothing short of “synchronicity”.
That’s because when Dr. Seibold took a closer look at Calvin and his biopsy tissue sample, he was quickly able to determine that Calvin’s illness was not eosinophilic fasciitis, but another very rare condition in the scleroderma family of diseases – generalized subcutaneous morphea. With the diagnosis established, the correct path to treatment could begin.
Lisa Rye recalls her relief and joy in finally finding a doctor who understood what was happening to her son:
“As we watched our son’s extremities harden, his fingers curve and his hands lose all strength, we lived a nightmare, and we could only imagine how painful it was for Calvin,” says Lisa.
“We kept thinking that this kind of horror shouldn’t happen to anyone. That’s why we were so relieved, and so grateful when finally Jim Seibold was able to correctly diagnose and begin to effectively treat Calvin’s condition.”
Today, as Calvin Rye continues his treatments at U-M, his condition has improved dramatically. He is exercising to regain lost mobility from the scar tissue that formed in his hands, arms and legs. He is back to playing tennis and ping-pong, and doing well in his second year as a U-M student.
Impressed by the expert and compassionate care they had received from Seibold, Jonathan and Lisa Rye soon began asking themselves how they might help others struggling with scleroderma and related conditions.
Therefore, in honor of what Lisa Rye describes as “the ordeal our son Calvin endured, the expert care he eventually received, and the grace of God,” the Ryes decided to give $2.5 million to support the U-M Scleroderma Program.
“When we began to learn about how Dr. Seibold had dedicated his career to finding effective treatments for scleroderma and other, associated conditions, Lisa and I were inspired to commit our energies and money to aiding him and his research team with the great hope of solving this disease’s mysteries and helping generations to come,” says Jonathan.
A complex and little-understood condition, Scleroderma causes tightening of the skin as well as progressive, life-threatening damage to the internal organs, including the heart and lungs. There is no cure, and its cause is unknown, although great strides are being made in managing its complications. It affects 150,000 patients in the United States and perhaps 1.5 million worldwide, mostly women in their child-bearing years. It is the most fatal of all rheumatologic diseases.
Based in the Division of Rheumatology within the Department of Internal Medicine, the U-M Scleroderma Program was organized two years ago as a multidisciplinary effort to bring together experts from a variety of specialties, such as Pulmonary Medicine, the Pulmonary Hypertension Program, Pediatric Rheumatology, Hand Surgery, Occupational Therapy and the Center for the Advancement of Clinical Research to develop and implement a comprehensive approach to scleroderma research, education, and patient care.
James R. Seibold – a Professor of Internal Medicine who came to the University of Michigan from the Robert Wood Johnson Medical School in New Jersey two years ago to develop and direct the new program – says he was attracted, in large part, by Michigan’s reputation as a world-class research institution.
“I believe Michigan’s extensive clinical and scientific assets – including its expertise in vascular biology and pulmonary medicine – make it the ideal environment for cutting-edge multi-disciplinary research aimed at reducing suffering, preventing death, and – ultimately – finding a cure for scleroderma,” says Seibold.
That confidence is echoed by Jonathan and Lisa Rye.
Displaying the same drive and tenacity they exhibited during the long struggle to solve the mystery of their son’s medical condition, the couple has taken an active role in supporting the U-M Scleroderma Program that goes beyond their generous financial contribution. The Ryes receive regular updates on the Program’s research efforts, and meet regularly with Seibold and other researchers to help devise strategies for helping the Program move forward.
Through their efforts, says Seibold, the Ryes have become partners in helping to advance the Program’s core mission.
As chairman of Bloomfield Hills, Michigan-based Greenfield Commercial Credit, Jonathan Rye says he is familiar with evaluating effective business models. As such, he says he believes the Program’s strategic, results-oriented approach to finding effective treatments makes good sense.
“I think Jim Seibold possesses the unusual combination of being a wonderful healer and a great scientist,” says Jonathan Rye. “Through our efforts, Lisa and I seek to highlight and accelerate the progress of his work by utilizing the power of interdisciplinary research at the U-M to find more effective treatments – and hopefully one day, a cure – for scleroderma.”
Marvin and Betty Danto
Marvin and Betty Danto make two gifts to the U-M Health System totaling $4 million, to fund research on scleroderma and cardiovascular conditions.
Marvin Danto, after starting as an assistant manager for the Detroit-based Englander Furniture Shops, went on to become Chief Executive Officer and Chairman of the Board of the eight-store chain. Later, he turned his lifetime of experience toward developing a new concept in marketing home furnishings – the Michigan Design Center.
Described as “the pages of your favorite design magazine come to life,” the 215,000-square-foot facility features over 40 professionally-designed showrooms highlighting the most exclusive home furnishings for design professionals and their clients. Danto later expanded the idea to build the 775,000-square-foot Design Center of the Americas, located near Ft. Lauderdale.
Throughout his career, Danto has solved many problems and faced many challenges. However, he says, one of his most difficult challenges has had nothing to do with business at all, but rather, a complex medical mystery.
For many years, Danto suffered from extreme sensitivity to cold that routinely caused his fingers and toes to blanch, as well as a host of other symptoms including numbness, tingling and burning sensations that made many daily activities very difficult, especially during cold Michigan winters.
This common syndrome is called Raynaud phenomenon. While easily diagnosed, recognizing its cause is far more difficult and treatments are seldom effective. Over the course of 15 years, Danto visited some of the nation’s top hospitals to learn more about his condition and to find more effective treatments. But, he says, no solutions were available and no answers forthcoming.
Later, a serious cardiac problem led Danto to the U-M Health System and to cardiologist Kim Eagle, M.D., the Walter Hewlett Professor of Internal Medicine – an event Danto now recognizes as very positive.
“Dr. Eagle was extremely thorough in evaluating my symptoms and my medical history,” says Danto. “He made a point of keeping me well-informed and reported back to me on my progress at every step. I found his attention to detail and his respect for me as a patient to be very refreshing.”
Danto says that Eagle’s exceptional skill and caring manner helped him find the medical answers he urgently needed – not only regarding his cardiac condition, but for his worsening Raynaud symptoms.
Eagle referred him to James R. Seibold, M.D., director of the U-M Scleroderma Program, who was able to not only confirm Danto’s Raynaud phenomenon, but, more importantly, recognize it as a symptom of scleroderma.
According to Seibold, Raynaud phenomenon is the most common initial symptom of scleroderma and ultimately develops in nearly all such patients.
Marvin Danto says he is very grateful to Eagle for taking the time to help him get the specialized care he needed and grateful to the team of Eagle and Seibold for mapping out a collaborative plan for effective treatment.
Danto says he attributes much of the credit for improvement of his symptoms to the professionalism and skill of Eagle and Seibold – who he characterizes as emblematic of the commitment to excellence that typifies the University of Michigan.
While he feels fortunate that his own case of scleroderma is relatively mild, Danto is very aware that the disease remains the most fatal of all rheumatologic illnesses – and one that continues to impose an overwhelming burden on many of its victims.
A desire to help others suffering with scleroderma, coupled with gratitude for the expert and compassionate care he received ultimately led Danto and his wife, Betty, to give $2 million to help support the U-M Scleroderma Program. Betty Danto has also been treated at the U-M, and two of the couple’s three children graduated from the University.
Their gift to the Scleroderma Program in the Division of Rheumatology will establish the Marvin and Betty Danto Research Professorship in Connective Tissue Research, as well as provide significant funding for the Program’s research into finding more effective treatments – and ultimately a cure – for scleroderma.
“I’m hopeful that the Dantos’ gift will help accelerate breakthroughs in understanding the disease processes active in scleroderma,” says Seibold. “We assume breakthroughs in scleroderma will ultimately benefit patients with other significant disorders of scarring and blood vessel injury.”
That’s why Eagle and his colleagues in the U-M Cardiovascular Center (CVC) are also working hard to gain a better understanding of the processes active in the blood vessel damage caused by scleroderma. Eagle says such knowledge will directly benefit persons with pulmonary hypertension, peripheral vascular disease, and perhaps atherosclerosis.
For that reason, the Dantos have also decided to recognize Eagle’s work in cardiology and vascular biology by giving an additional $2 million to help fund the U-M Health System’s new CVC building project. Danto says he first learned of the CVC building and vision from Eagle, a co-director of the CVC.
Calling Eagle “one of the finest individuals we have ever known” and an “absolutely marvelous” physician, the Dantos say they hope their CVC gift will help more people learn about cardiovascular conditions, including scleroderma, that affect so many people and their families. They especially hope that other physicians can come to the building to learn from U-M faculty and staff, to understand the latest findings about this disease and its treatment.
“We feel very close and indebted to the University of Michigan Health System,” says Marvin Danto.
In recognition of their gift to the CVC, the University plans to name the auditorium in the Center’s new clinical building The Marvin and Betty Danto Auditorium, and to utilize the gift to promote education and training for cardiovascular professionals in the CVC.
Now 90, Marvin Danto acknowledges that the benefits of the research he and his wife are helping to make possible may simply come too late to help him personally. Nevertheless, he is optimistic about the work in this area now being done at the U-M.
“Hopefully the work that Kim Eagle, Jim Seibold and others are doing will someday bring real benefits to people who are suffering with this condition.”
“But who knows,” he says, after a pause, “maybe it will help me, too.”
The Dantos, who still live in Michigan but now spend their winters in Longboat Key, Florida, say they are excited not only to be supporting ground-breaking research efforts by researchers like Eagle and Seibold, but also to be helping make possible future U-M research on this important subject.
“We don’t consider ourselves heroes,” says Marvin Danto, “we’re just doing what we can to help.”
The Dantos say that everyone they’ve encountered in the U-M Health System has been “just phenomenal,” and that they both feel “very lucky to have the opportunity to help build upon the generations of prior benefactors who’ve all done their part to help find effective treatments and cures.”
“It really feels good to help yourself while helping others,” says Marvin Danto. “For their own good, and for the good of their children and grandchildren, I encourage everyone who has the means to consider helping support this critical medical research. These people are doing truly amazing work, but they can’t do it alone.”
Anthony Dolce and Family
Linda Dolce had scleroderma but that is not who she was!
With numerous friends and family, Linda Dolce was truly blessed and spent her life as a blessing to others. Linda was a teacher, a motivational speaker and a leader who touched many lives – just when they needed support and encouragement the most.
As the first woman Little League coach in New Jersey, she taught kids and their parents that they too could have a lasting impact on their community and a sport they loved. Linda was a wife, a mother and a friend who knew the value of impacting the lives of others for the better, one person at a time.
Her son, Peter, remembers her reminding him to work hard and do the best that he can. Her daughter, Deena, remembers her advice not to waste a worry and that everything always feels better in the morning. To her husband Anthony, Linda was his best friend, the love of his life and his anchor.
Filled with energy and the joy of life, her sense of humor was as contagious as her optimism. Linda was a risk taker, a trendsetter, a “glass-half-full-thinker,” and a brave woman who faced scleroderma with quiet strength.
In short, Linda Dolce was a fighter.
Paving the Way for a Cure
Founded by Anthony Dolce, President of RC Dolner, a major New York-based construction company, the Linda Dolce Scleroderma Research Fund is dedicated to honoring his late wife’s memory by helping the University of Michigan Scleroderma Program advance the understanding of scleroderma disease mechanisms and to helping the Program develop new interventions and treatments that may one day lead to a cure for scleroderma.
Make a Difference
Your gift to the Linda Dolce Scleroderma Research Fund helps to enable high quality research that is critical to helping develop better treatments, and ultimately, a cure for scleroderma.
For further information about how to make a gift, please visit the University of Michigan Linda Dolce Scleroderma Research Fund online giving page.
“We lost Linda to a long struggle with scleroderma lung disease and we want to honor Linda’s brave fight and that of other scleroderma patients like her. The Dolce Fund recognizes both the exceptional need for research in scleroderma and the belief that the University of Michigan Scleroderma Program will lead the way to a cure.” – Anthony Dolce
Bruce and Meryl Raiffe
As leaders of various New Jersey based fundraising activities, Bruce and Meryl Raiffe's hard work has generated nearly $1,000,000 in research support.
Bruce and Meryl Raiffe, of Warren, New Jersey are both successful business people. Bruce is CEO of Gund Inc., one of the oldest and largest leading soft toy manufacturers in the U.S.; and Meryl is President of Allbook Inc., which provides the finest quality books, educational materials, and merchandise to school book fairs in the northeast U.S.
When the couple first learned of scleroderma five years ago, they sought the very best for guidance.
“When an illness like scleroderma impacts a family, one can only hope to have a medical professional like Jim Seibold working on treatments and cures,” says Bruce Raiffe. “Meeting Dr. Seibold over five years ago was one of the most important days in our lives. Having an accurate diagnosis was our first step towards understanding this illness. Working with Dr. Seibold as a dedicated champion of scleroderma research has led to encouragement and a real sense of progress.”
The Raiffes were strong supporters of Dr. Seibold’s research program in New Jersey and have continued their active involvement since Dr. Seibold’s move to the University of Michigan. As leaders of various New Jersey based fundraising activities, their hard work has generated nearly $1,000,000 in research support.
“Dr. Seibold’s dedication to scleroderma research and the care of his patients is unmatched by others in his field,” says Meryl Raiffe. “We feel so fortunate to have his talent and that of his supportive team at the University of Michigan Scleroderma Program to further this research. It is our hope that this work will soon result in effective treatments and ultimately a cure or prevention of scleroderma in all patients.”
In 2005, the Raiffes hosted a record-breaking golf outing featuring 18 different cars to be won by participants at the exclusive Hamilton Farm Golf Club in Gladstone, New Jersey. This successful fundraiser was repeated in 2006 with more than $1,000,000 brand new cars, including a Bentley and Rolls Royce, offered as hole-in-one prizes. These two events raised over $500,000 for scleroderma research at the University of Michigan.
“The strong and durable support of passionate and savvy people like Bruce and Meryl Raiffe both facilitates our research and drives us to work harder,” noted Dr. Seibold.
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.
Support Our Work
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.
To make a gift to support our research, please visit the Scleroderma Cure Fund.