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Sharing their #SclerodermaTruth
There are an estimated 300,000 people in the U.S. living with scleroderma. It can make everyday life very difficult and for too many it can become life-threatening. These are the stories of just a handful of the people affected by scleroderma.
We are proud to serve ALL of the scleroderma warriors out there who, despite their challenges, continue to live with resilience, grace and hope. Thank you for sharing your #SclerodermaTruth.
Simona Rolli
Elgin, IL
Diagnosed 2020
Scleroderma is an insidious disease. In my case all the organs are impacted to some extent, including skin, kidneys, heart and lungs. I immediately thought about alternative solutions to things that might have been difficult at times, such as putting contact lenses on when your skin is so tight that your hands have lost fine motor skills. I bought myself a nice new pair of glasses and waited and now, low and behold, I am back to wearing contacts. I always had exercise machines at home and the only thing I had to give up was swimming in winter in an indoor pool. In summer, however, I can swim outdoors. I have always been very fit and that helped a lot.
The biggest challenge is being immunosuppressed. In my case it caused a West Nile infection to develop into an almost deadly encephalitis - I managed to survive but had to overcome some long-lasting neurological damage. All is well that ends well, but I am counting the days to drugs less invasive than total immunosuppressive ones.
As a scientist myself I am very confident that great progress will be made in understanding and treating scleroderma. As a patient I am thrilled to be part of research and clinical studies. Attending support group meetings, made it easier to meet other patients, given the rarity of the disease.
I realized that the level of resilience I have is astonishing. Nothing is impossible when we can think proactively of solutions and sometimes things we take for granted can be easily modified and still give the greatest satisfaction. I am much more aware of what my body tells me and I have learned to listen to it; I pace myself. I have always been an optimist, even if I thought of myself more as of a realist. And I was lucky enough to have a wonderful partner who has been supporting me all the time, as well as my family abroad in Italy and friends here in the U.S.
Steven Michael Ahohen
Sarasota, FL
Diagnosed 2003
By far lung involvement has been the most difficult part of having scleroderma. Not being able to breathe is the worst. I was blessed that a kind and thoughtful person donated a wonderful pair of lungs that I received in July of 2012.
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Family support, a good attitude, and great medical teams are the things that give me hope and strength. There is comfort in knowing that you are not alone.
There have been many challenges during my 20 plus years of living with scleroderma. There is not a cure that fixes everything. The treatment you follow today, might be the challenge you are dealing with tomorrow. The best thing is still waking up and seeing another sunrise, watching your children grow up and hugging your grandchildren. Being alive is awesome, so enjoy it as long as you can.
Charisse Bruno
Buffalo Grove, IL
Diagnosed 2022
When you’re new to scleroderma like me, don’t think every symptom is arthritis or something. You have to check every time if it’s your scleroderma. They diagnosed me with lupus and scleroderma overlay, but sometimes you might have more scleroderma than lupus or it might be your arthritis. Don’t think that if you are achy that day it might be due to an autoimmune disease. If you are having other issues you have to do your own research and check with your doctor to see if it’s scleroderma-related.
My biggest challenge living with scleroderma is, because I’m new to it, there are changes happening to my body or certain problems that come up that I don’t realize are scleroderma-related. So, I have to really do my own research and make sure I call my doctors to immediately say what is happening.
What gives me hope living with scleroderma is coming to education conferences. I have learned so much that it helped me take on this new disease. Attending conferences like the one in Chicago is where I learn new things regarding scleroderma and what’s happening to me. So at least I understand now how to combat it. Attending these conferences has changed my journey because it has educated me more and given me resources to help myself.
Serita Gibson
Desoto, TX
Diagnosed 2003
Systemic scleroderma has damaged my muscle tissue (atrophy) all over my body causing severe muscle weakness and extreme weight loss. I’ve lost 27 lbs and it’s very difficult to gain any back. I lose my balance when I attempt to squat or bend down. I’m unable to pick things up from the floor or get items from low shelving or drawers. I’m unable to lift a plate/bowl of food or a full cup of liquid to my mouth. I cannot lift my arms above my head and I cannot stand or step up without assistance. And my every step and turn is calculated because the slightest misstep will result in a fall. I’ve fallen 5 times since my 2004 diagnosis and once prior. The last fall resulted in a broken left femur.
The muscle weakness and physical changes made me afraid and ashamed to go out in public. I didn’t want to leave my home alone or go outside. I did not start leaving my home alone until 2009 but only to the grocery store and church. I have three beautiful grandchildren but I have only been able to hold them in my lap and I’m not able to have outings alone with them for safety reasons.
I find hope through my faith and family. My strength comes from encouraging others with this disease. Attending a support group has provided me with more knowledge and a “listening ear” for those who understand this struggle. What I would say to others is, you can win YOUR battle!
Emily Johnson
Plainfield, IL
Diagnosed 2016
I would like people to know that living with scleroderma certainly has its challenges and it affects everyone differently. So be patient with your loved ones, they desperately wish this disease didn’t affect them the way that it does.
My biggest challenge is the exhaustion and joint pain that comes with this disease. Some days I have no energy to do anything and I have to listen to my body and slow down. Also, the fact that it is a widely unknown disease can be a big challenge in finding doctors that know how to help, etc.
My hope lies in the belief that we will one day find a cure and be able to slow the progression of the disease. When I was first diagnosed it felt like my future was very grim, but I chose to continue to live my life, pursue my dreams and be grateful for every moment I’ve been given! Since diagnosis, I’ve gotten married, had a baby boy with another little one on the way and I continue to remain hopeful for a beautiful future with my family!
Alejandra Serrano
Los Angeles, CA
Diagnosed 2012
My life changed after being diagnosed with scleroderma at the age of 18. I decided to leave college to focus on my health. Being diagnosed at the age of 18 I had to face a lot of doctors not believing I was sick. I had to learn to advocate for myself.
When I was diagnosed I felt depressed because my whole life changed. My body changed a lot and I wasn't able to use my hands. I wasn't able to be a normal teenager. Throughout the years I learned to accept my disease and all the changes.
I am now 31 years old. Joining a support group has really helped me, especially because I can connect with people who are around my age that are going through the same things that I am going through and we are able to understand and support each other especially when we are having hard times.
Mary Piper-Stanwyck
Oak Lawn, IL
Diagnosed 2014
What I’d like people to know about living with scleroderma is that everyone’s journey is very different. I was pretty sick at first and very fatigued and I had issues with my hand function but I kept at it. The more education you get the more you learn about what’s really going on. My hands are my biggest challenge living with scleroderma. At first, I loved to cook and I couldn’t cook anymore. I had pretty decent handwriting and then my handwriting was a mess. Some people look at me and wonder what is wrong with my hands, but I don’t mind talking about it.
Living with scleroderma has been a journey. It is a very scary disease when you first get diagnosed with it, but I have found a way to live with it. I have learned gratitude and learn that people are very kind and helpful. And it’s weird to say but I think it made me a better person.
What gives me hope and strength living with scleroderma is there’s so much research going on. There’s so much that’s happened in the last ten years with treatments and medical research. And there’s a lot more awareness of it. The other thing that gives me hope is my support group. I have a strong support system with my family and my friends. They back me up. They are my strength.
Tiffany Shank
Fountain, CO
Diagnosed 1989
I've had scleroderma since I was four years old, so scleroderma has affected my entire life actually. When I was diagnosed, I had to travel to Boston to the children’s hospital every 2 weeks until I was 18.
I am also the mom of a 14-year-old. I think being a mom has been the hardest part about my journey with scleroderma because scleroderma can affect you anytime anyplace out of nowhere with flares and different symptoms. So you never know when you're going to be in the hospital, sometimes for a week or two at a time.
My friends and family don’t understand how one day I can have energy and get out of bed and clean the house and do things and then I’m down for the count for a week after that because I exerted so much energy the day before. So the community is very important to me. I lean on them for support and guidance.
I’d like to think I was given this disease because I'm strong enough to bear it. I like to do advocacy work and help other people who are diagnosed with the disease as well. I reach out to a lot of people who are newly diagnosed and try to guide them through their feelings and emotions.
I'm grateful that I've been able to have this disease for over 35 years and still be here and still be able to share my journey and talk about it and advocate for awareness. It has shown me what a real community and what real support can be like. I love telling my story because I love inspiring people. I love letting people know that you can live with this disease and you can do great things with this disease. Even if my story can reach just one person and inspire them, that's everything to me.
Angela Davis
Muncie, IN
Diagnosed 2017
Living with scleroderma has been life-changing! I feel like I lost my independence. I feel forced, at times, and sometimes ashamed, to ask for help. I used to be able to clean my 3-bedroom house in 4-5 hours but now it takes 2-3 days. I cannot hold a cup or a bottle with one hand without supporting it with my other hand. I have difficulty gripping and holding a utensil, stirring a pot, putting things in, and taking things out of the oven. I love to sing in the church choir, but I am unable to sing. My shortness of breath prevents me from projecting my voice and my mask makes it difficult to breathe.
Even though our diagnosis of scleroderma is the same, the journey will not be the same for each of us. We will each have to learn in our own individual ways how to embrace our pain and the challenges up ahead as a normal part of life. In other words, is our glass half empty or half full? Our perspective or outlook will help to set the atmosphere and course for the journey.
It’s challenging for me knowing there is no cure, but my faith in God, my family and friends and millions of scleroderma warriors who face the challenges of this disease every day give me strength and hope.
Karen Brown
Chicago, IL
Diagnosed 2017
I would like people who are living with scleroderma to know that the most important thing is being an advocate for yourself.
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A challenge for me is facing unknowns that exist with scleroderma, because the disease shows up in different ways for different people. It is hard to predict and hard to know what to anticipate. I also have another autoimmune disease, so It is hard to know when I am experiencing a symptom whether it is scleroderma or the other one.
I find hope and I get strength with having a solutions-oriented mindset. Because of that, whenever I have an experience, I go to “how do I solve this?” What can I do to manage the situation or solve the situation? And because I am an optimist and solutions-oriented person, it keeps me going everyday tackling this disease like a champ.
Helene Golston
North Las Vegas, NV
Diagnosed 1996
What I would like people to know is that there is hope after your diagnosis. It’s my 28th year with Systemic Diffuse Scleroderma and I am blessed to be alive and to be able to encourage others. I’ve been a support group leader for over 25 years and my heart goes out to new patients. I want to support, encourage, and give others hope. That’s what a support group is for. I would tell people to take one day, one symptom at a time. Don’t let your disease define you. Stay positive, share your experiences with others, and never give up.
The biggest change in my life post-diagnosis was changing my lifestyle, eating habits, and mindset. My progression was very fast, going into renal crisis within weeks of diagnosis. Right now my biggest challenge is the pain from calcifications in my body. I’m currently being treated by an Integrative Health Professional who specializes in alternative treatments.
My hope and strength come from God. When I am at my weakest HE gives me strength. Also, the support of my family and friends keeps me going.
Franny Kaplan
Highland Park, IL
Diagnosed 2009
The hardest part about living with scleroderma is not being able to physically do the things I used to be able to do. I can’t walk up hills or a lot of stairs without stopping and resting for a while. I can’t keep up with friends when walking. I’m much slower and I get out of breath when I try to walk faster. Eating is probably the biggest challenge. My digestive system has really slowed down. I don’t digest food well and I have a lot of acid reflux so it’s not always fun to eat.
What gives me hope and strength is other people. I get so much support from everyone. The scleroderma community is incredible, supportive, dedicated, kind, and helpful. We all can relate and understand what we're going through. There is a sense of belonging and understanding.
I tell people that you need to be your own advocate, don't hesitate to ask for help, join a support group, be active in the scleroderma community, and stay on top of your healthcare. Over the years I’ve met some incredible people who are knowledgeable, kind, and always wanting to help. I always feel so grateful at the end of a support group meeting.
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Jackie Latka
Omaha, NE
Diagnosed 2012
Living with scleroderma, every day is a different day. It could be an easy one or a challenging one. Every person I have met with scleroderma is so positive and a person i have become friends with. The disease is challenging so it is nice to have others to ask questions to.
Mobility and continuing to try to be healthy is my greatest challenge.
I find hope in other patients. I also find hope in spreading the word about this little-known disease so people, especially medical professionals, know about it. The support group provides support and a forum for people to understand what we are going through.
Elizabeth Theisen
Brunswick, ME
Daughter/Caregiver
While suffering from scleroderma my mother was incredibly brave when we know she was in pain and unable to do some tasks she was used to doing. My mother was unable to travel the way she and my father had hoped to in their retirement. They had to move from a home they had built as their retirement home in Pennsylvania to Florida for the warmer weather. It was hard for the rest of the family, not to see them as often as we had before they moved.
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Fortunately, my mother found support from my father who loved her dearly and was an amazing caregiver! Plus, she loved being around her grandchildren. They brought her such joy and happiness.
All of the scleroderma warriors I have met who have to deal with pain, trouble breathing, walking or other basic tasks never complain or say “Why me?” It always impresses me how strong they are every day. The people I have met are amazing. They face each challenge and find ways to get things done.
Hopefully, the scleroderma warriors out there will find hope, strength, and support through support groups, through reliable websites like the Scleroderma Foundation of Greater Washington DC, or from one of the amazing scleroderma clinics.
Grace Pour
Denver, CO
Diagnosed 2007
Hi I’m Grace and I’m seventeen and what gives me hope is the support from my friends and family and the love for my pets that I get every day. And the hardest thing with scleroderma is probably having to adapt everyday life to things that most other people wouldn’t have to change.
Mercedes Howard
Inland Empire, CA
Diagnosed 2017
What gives me hope is being able to wake up every day and spend time with my family and my loved ones, to just live my life and not let scleroderma take it over. I have scleroderma. Scleroderma doesn’t have me, and that’s something that we have to remember.
I am doing my best to pay it forward. I had the stem cell transplant two years ago and I am part of the research for the radiation for scleroderma patients. I am a support group leader in California. I want to help others be able to live their lives as I have been able to live mine. What gives me strength is being able to be there for others and knowing that I can help them through this journey. We can’t let scleroderma win!
Demeshia Montgomery
Dayton, OH
Diagnosed 2001
Over my 23-year journey, I have been affected in many ways. I have experienced tightness in my hands, which caused my left hand to contract. This also forced me to rely on my right hand more. Over time, due to overuse, it has caused me to require several partial amputations on my right hand. I'm also unable to handle being in cold environments for long periods of time. I have to make sure I wear or carry gloves. The exposure can cause a scleroderma flare that could lead to ulcers appearing on my fingertips or knuckles.
I no longer can hold or grasp items. I now need assistance regularly to carry, open or hold items. It has also caused me to need help with many grooming activities as well. Now I have to be aware of everything I touch so I don't bump my fingers and create additional damage to my already fragile hands.
I find hope every time I'm able to help someone else to enjoy their journey! To see that their voice matters and they can be a part of healing others. Hosting a support group and other activities allows me an opportunity to share what I have learned with others. So that they have the support and safe space they need to discuss challenges and find answers to questions they have.
Your journey can still be your own. You have the power to still lead an amazing life!
Aissa Norris
Niantic, IL
Diagnosed 2015
My biggest challenge living with scleroderma is not knowing day to day how I’ll feel getting up. Some days are great and some days are miserable. So, learning to modulate myself and give myself permission to not be ok sometimes. That was the biggest challenge I’ve had to overcome.
I am also a caregiver for my two parents, which is really a challenge living with scleroderma. I think from the caregiver side, being knowledgeable about the disease that you are giving care for and making time for yourself as a caregiver is so important.
I want people to know that when you’re living with scleroderma there’s always hope and the importance of staying positive. Not to say that there aren’t bad days, but trying to stay positive and move forward.
I think I find the most hope in being part of a support group. Being able to lean on others has been a great healing mechanism. Attending conferences and support groups has led me to learn about new treatments that I’ve then gone to my primary care physicians and other doctors to ask about. You are your own best advocate. No one is going to care for you or seek treatment and support for you, as well as you.
Elizabeth
Baltimore, MD
Diagnosed 2022
The hardest part of the disease is living with the uncertainty about your future, and the future you planned with your spouse. It’s also difficult telling people I have the disease. Some have been wonderfully supportive, while others have turned a cold shoulder, look at me with pity, or only want to talk about my illness. I just want to be treated like the “old” me.
It is hard to be hopeful in the face of an incurable disease, but I try to remind myself that the statistics are just there to help my doctor know what to monitor me for.
I try to do something that brings me joy every single day, whether it is taking a walk, making art, talking to my kids, or spending time with my husband. Finding a Newly-Diagnosed Support Group was so helpful to me in the early months of my diagnosis not only for the information that was shared, but just knowing others were going through the same experience and having some of the same symptoms. It felt like, “Finally someone understands.” I ended up connecting with some members outside of the group, and I cherish their friendships.
Dee Burlile
Idaho
Diagnosed 2016
As I continue to advocate on behalf of people with scleroderma, PAH, arthritis, and other invisible chronic illnesses, I want Congress to know that the current medical industrial complex has cost my family an average of 44k out-of-pocket for the past 8 years. I have had to travel out of state to see specialists for the past 8 years and many of the pharmacies and physicians do not accept Medicare assignments, which have contributed to the financial and emotional burden on my husband who has served this country and our family of 5.
Having a rare disease is not a job I signed up for, and my children should never have had to take on a job they didn’t sign up for either. Their job description should not be that of a healthcare worker. Rather than actively engaging in schoolwork, playing sports, and spending time with their friends, they have had to spend much of their childhood caregiving for me by helping me change my ostomy bag, untangle an oxygen cannula cord, sit bedside during infusions or help sort medications and write appeals to insurance companies. For those of us on the inside of this medical industrial complex, it’s not political, it’s personal.
John Blum
Bellingham, WA
Diagnosed 1998
It's something that never leaves your mind. Nearly all decisions made have to consider the potential ramifications due to this disease. That, however, doesn't mean that it has to control your life. As background, in the late 1990s, while rehabilitating from foot reconstruction, I found myself continuously out of breath. I thought it was due to being confined in a cast and inactive for four months. When the cough progressed to the point where I couldn’t utter a sentence without coughing, however, even I realized it was time to seek help.
After months of tests and exploratory procedures, including an open lung biopsy, I was diagnosed with progressive systemic scleroderma with lung involvement. The prognosis was rather dire: a potential heart/lung transplant, which at that time had an extremely low success and survival rate. I was told to get my affairs in order.
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It's something that never leaves your mind. Nearly all decisions made have to consider the potential ramifications due to this disease. That, however, doesn't mean that it has to control your life. As background, in the late 1990s, while rehabilitating from foot reconstruction, I found myself continuously out of breath. I thought it was due to being confined in a cast and inactive for four months. When the cough progressed to the point where I couldn’t utter a sentence without coughing, however, even I realized it was time to seek help. After months of tests and exploratory procedures, including an open lung biopsy, I was diagnosed with progressive systemic scleroderma with lung involvement. The prognosis was rather dire: a potential heart/lung transplant, which at that time had an extremely low success and survival rate. I was told to get my affairs in order.
A treatment plan initially worked, and then the disease came back with a vengeance. It wasn’t until I traveled to the University of Colorado did they find something that was effective, and I began to respond positively. My lung function had increased so dramatically and was so far outside the expected range that they made me take the pulmonary function test four times on different machines - They had never seen these results before! I have been able to return to many of my everyday activities, for which I am very grateful. But, cold and winters are terrible, I can no longer SCUBA dive (which was part of my occupation), and I have to take precautions whenever I leave home and always have my "bag of stuff" in case it is needed.
I became aware of foundations that supported scleroderma patients when friends asked me to join them for a Scleroderma Walk with my name on their T-shirts, a very heartwarming, yet humbling experience. I had remarkably recovered; many present that day on the walk had not. That event planted the seed which ultimately led to the Scleroderma Outreach NW Board as a way for me to give back.
My biggest challenge was never letting myself down and keeping my focus on beating this disease. It has, at times, caused me to dig deeper than I thought I could, but the drive to move forward helps me to get through those times.
An unasked question was, why? That answer was more complex. When I was finally diagnosed, I was told that they now knew which “box” to put me in; I’d never heard of scleroderma and had to look it up. I knew no one who had this disease, nor where to turn. My family and friends, who were instrumental in my recovery, couldn’t understand what I was going through. Those of us challenged by this disease know what it is to feel frightened, confused, and totally alone. While I recovered, I often wondered why I was blessed, while others were not. The answer is to assist others on this journey, and pay forward the kindness, love, and encouragement that was so selflessly provided me. And most importantly, to offer hope. We can beat this, and I’m committed to being here to support that effort! I used my diagnosis as a catalyst to learn about his disease and joined the Scleroderma Outreach Northwest Board.
It has provided me an opportunity to help others who share this disease. I could not have gotten through my journey without the help and support of many people. I am now here to provide to others what had been given to me.
Jennifer Zelnick
Pasadena, CA
Diagnosed 2020
Living with scleroderma has changed the course of my life in innumerable ways. When I was diagnosed, I was completing a PhD in anthropology. I conducted year-long research in Cambodia and traveled extensively. After my diagnosis, I came to realize that balancing scleroderma and a career as an anthropologist might not make sense. While I love my work now, it is painful to think that my decision to change fields was motivated by my illness.
To me, living with scleroderma means being constantly vigilant and concerned about my health. It means learning to understand medical jargon and test results, and to advocate for my needs. Living with scleroderma means worrying about COVID-19 long after most people and institutions have stopped acknowledging its threat to immunocompromised people like me.
Living with scleroderma means radically changing what I expect for myself and my life's trajectory. While I would like to have a child, remains to be seen whether I and my spouse will be able to realize that dream. There is still so much of the world I want to see, but navigating travel as an immunocompromised person with complex medical needs proves challenging.
I feel hopeful reading about scientific advancements in scleroderma and rheumatology broadly.
Attending the young adult support group was the first time I ever met people my age with scleroderma. It's difficult to describe why, but knowing people my age in my area who understand what it feels like to have scleroderma is incredibly powerful.
Cindy
Rancho Cucamonga, CA
Diagnosed 2021
I was diagnosed in November 2021 but had symptoms three years prior to getting a diagnosis, after seeing a scleroderma specialist. At first, the diagnosis felt overwhelming. My quality of life was very low at that time. I was not able to do normal things like getting dressed, getting out of bed, putting on my shoes, and many other tasks. I remember wondering how I was going to make it to the next day because I had just lost my mom and I had this difficult diagnosis and was trying to make sense of it all. My husband encouraged me to take it one day at a time.
That's when we joined our local support group. It was encouraging to meet other people who dealt with or were dealing with some of the same health issues I had, and I finally felt like I wasn’t crazy after meeting people a lot like me. I was given the opportunity to co-lead the Inland Empire/San Bernardino scleroderma support group and was excited to take the position. My desire as a support group leader is to help others feel hope and show them that they are not alone, and that we are in this together.
Nancy
Las Vegas, NV
Diagnosed 2015
I was diagnosed with scleroderma in 2015 and shortly after I was introduced to the Scleroderma Foundation of California where I was provided with local support and resources to help me through my diagnosis. My lungs were steadily declining and I learned that I would need a Double Lung Transplant. I persevered through some of the most difficult times of my life while on oxygen 24 hours a day when I got the call that would change my life and in March of 2022, I received my new pair of lungs. I always wanted to give back and remember how it felt when I was initially diagnosed. The support that was given to me throughout my journey gave me the hope and courage I needed to fight to survive and happily accepted the position as co-leader for the Las Vegas support group.
Maura
Thousand Oaks, CA
Diagnosed 2014
I was diagnosed with scleroderma 10 years ago a after battling pneumonia several times one winter, seeing several local specialists, being misdiagnosed, and then finding a local rheumatologist who told me to see a scleroderma specialist. There was a defining moment that changed everything for me, a local doctor told me I probably would not be around to see my 13-year-old twin children graduate high school. I realized I needed to become more involved, fight for myself, and be that warrior.
I did a lot of research and realized I could not fight alone and wanted to find others like me, hoping that a "village" would help me fight this disease. My journey led me to a scleroderma specialist who told me about the Scleroderma Foundation, and the Camarillo support group. By attending meetings, I met and became friends with fellow warriors and our leader at the time who always checked on me. This group became my life support, sharing similar stories, and offering support and advice. I want to "pass it forward" and help other warriors as a co-leader and help other warriors battle on
Melissa
Simi Valley, CA
Diagnosed 2020
I was diagnosed with Scleroderma in late 2020, a disease I knew nothing about, and spent a little over a year depressed and afraid of what I was experiencing. Fear and the isolation from the pandemic left me feeling helpless and I felt that nobody understood how sick I really was, or how this disease was affecting me physically in so many ways. In mid-2021, I took the step to see if there was a support group and was pleased to find there was one in Ventura County. Too afraid to call the phone number listed, I emailed the support group leader for information and that phone call was life-changing for me. She listened to me and made me feel like I wasn’t alone. She gave me hope.
I started attending the meetings virtually and later I helped find a location to meet in person again. It made a huge difference for me to sit in a room with others who also had scleroderma and hearing their stories made me feel not so alone in this battle. It was the first time since my diagnosis that I truly felt others understood what I was going through. The Foundation was looking for two local support group co– leaders and I knew I could take this as part of a team. I hope our group’s support will be life-changing for somebody that needs support and to know they are not alone.