Faces of Scleroderma

No matter what your connection is to scleroderma, you have a story to tell. Please share your story to include in the "Faces of Scleroderma" that are featured on our website. Your stories are an inspiration to others who might be going through a difficult time and help build awareness about scleroderma across the country. Please email us at mystory@scleroderma.org to share your story.

You also can click here to submit your story via our website >>


Read The Stories

Tubey in Her Tummy
My name is Chanel White and I was diagnosed with Systemic Sclerosis at age 20, I am now 23 years old.

Sideline Spouses
Being my wife's biggest fan doesn't seem like enough

Diagnosed at Age 67
Diagnosed in 2014 at age 67. Happy with my rheumatologist. Hoping to connect with others who were first diagnosed over 60 and to share stories/symptoms.

Scleroderma
"I'm so sorry for anyone that gets this disease."

Memory
We all remember when, but live life now.

Family, Friends and Foundation
When being diagnosed with Scleroderma you need to rely on others to help you get through this.

My Mom, Margarita Herrada
"She had this disease for over 30+ years."

I Was Certain That I'd Never Play Guitar Again
The old adage "Never say never" proved to be true in this instance.

My Scleroderma Story
Went to the doctor in October 2011 because my hands hurt...was diagnosed and being treated for occupational carpel tunnel syndrome. It took another 11 months before I was officially diagnosed with scleroderma.

Then and Now
"I even did a couple of Ironman events."

I've Lived with Scleroderma for 20 Years
"I feel very fortunate to have made it this far!"

My Music is My Therapy
It is my intent to inspire and uplift others through my music.

I Have Learned to Be the Best I Can Be
"I will never be stopped by this disease, I will be me until there isn't any me left."

Purple Feet
Yesterday was my birthday, of sorts so I'll tell you a story. Purple (as in the royal purple) had long been my favorite color until it became a literal part of me in ways I could never have imagined.

Resilience and Regularity
How I was diagnosed with scleroderma, how that affected my school work, and what it means for me now as a college student.

Surviving Scleroderma
I have had Scleroderma for almost 8 years and other connective diseases.

Hi, my name is Diana Cortes and I have scleroderma
"Please let's not give up and have faith, that is what is keeping me going."

You Think it Won't be You
"What is the lesson in seeing 6 different rheumatologists (and 2 dermatologists) before getting diagnosed? There is still a long ways to go on educating doctors on what systemic sclerosis is."

Diagnosed With Scleroderma a Year Ago
"I ran out of breath, I was not able to take a deep breath at all and got scared because a year before I was fairly active and would ride my bike to and from work (about 6 miles each way) a couple of times per week."

Cruise for a Cure 2012 (Video)
"For awareness, we did a video of the 1st Annual Cruise for a Cure that was held April 15, 2012. We raised $6500 that year."

I Try to Not Let Scleroderma Be the Thing That Defines Me
"I hope that our story inspires other patients to keep moving forward and trying to live their lives. I also hope this serves as an example to caregivers, family members and friends of patients. Love and support means so much!"

What's this?
I went from active to mostly bed ridden very quickly.

A life-changing journey
I have had Scleroderma for three years now, and it has made me a better person because I know what suffering really means and I sympathize with others who are suffering. Likewise, I realize how precious life is.

The struggle is over..Heaven's New Angel-My Sister
For eight years my sister battled scleroderma. She fought a good fight until God called her home on April 29, 2014.

11 Years Past Expiration!!!
Bring on the Rest of my LIFE!!!

I Suffer From Scleroderma - My Selfie
"I do my coping day by day..."

Scleroderma & Me
"I hope to meet more people who are dealing with this condition and help uplift them."

Scleroderma - My Journey
"It's been a long 11 years but all I can do is take each as it comes, then just go along with my life."

Diagnosed with Scleroderma Pulmonary Fibrosis
My life day by day living and struggling with this disease.

Dr. Kathryn Torok: Helping Kids Live Better Lives with Scleroderma
Dr. Kathryn Torok is director of the Pediatric Scleroderma Clinic at Children's Hospital of Pittsburgh, part of the University of Pittsburgh Medical Center Scleroderma Center. She also is an assistant professor of Pediatrics, University of Pittsburgh School of Medicine, Department of Pediatrics, Division of Rheumatology.

Antonietta's Story
Antonietta Chiocchi from Wallkill, NY shares her scleroderma story and proves how a strong support system and being your own advocate are important in getting answers for your health.

My Battle With Scleroderma
I have endure eleven years of this long, rough battle, and I am proud to say that I am still fighting and standing stronger than ever.

My Voice - Q&A With Ashton Cooper
Ashton Cooper is an 18-year-old freshman at the University of Louisville in Kentucky. She was diagnosed with localized scleroderma when she was 7. We talked with Ashton recently about growing up with the disease, including being bullied at camp, difficulty taking medications and her future.

Taking Control: Joy Bobo
Joy Bobo, 69, of Arlington, Texas, was diagnosed with systemic scleroderma in 2001. This is the story of her scleroderma journey, told in her own words.

Living With Scleroderma: Joy Bobo
Featured in the Spring 2014 issue of the Voice, patient Joy Bobo has offered to share some of her coping techniques to help improve your quality of life while living with scleroderma.

Hope Raisers: Kim Brooks
Event Raises Much-Needed Attention of Scleroderma to African-American Women

Grace Meihaus
"I am a dreamer, a writer, a fighter and a lover of good food!"

From the Heartland: Jackie Latka
In My Own Words

Eric Priest: Evolving from High School to Dorm Room
Living with Scleroderma and Being Away from Mom and Dad...

My Mother's Story
My mother, Gayla Ison Riffle, passed away from complications of this disease on February 5, 2011.

Staying Strong
Living with a autoimmune disease everyday of my life.

Tough Skin
Wilbert's fight with Scleroderma

Me & Scleroderma
My Introduction To Scleroderma

A Daughter's Experience
On losing her mother to scleroderma

Mysterious Symptoms
I struggled with unexplained illnesses for twenty years until being diagnosed with scleroderma in 2010.

Message to the State for our service members
I could not believe that our VA is so behind on Scleroderma that they would have a nurse determine my future from a web site and override a Dr.'s findings.

There is Hope
In 1983, at the age of 15, I was diagnosed with localized linear scleroderma. Doctors told my parents to prepare for the fact that I could become crippled or deformed. I am happy to say that in 2011 I finished my first Ironman. I am a lucky one.

My Father, My Hero
This is just a glimpse into my life since 2010. And the tribulations our family helped our dad through during his fight against Scleroderma.

Scleroderma Awareness
My sister, Arlene, passed away in November 2010 due to complications from Scleroderma.

Living with Scleroderma
Life changing disease. Having knowledgeable Dr. make a World of difference.

Betsy Craig: A Roaring Spirit
"If I can help advance the word 'scleroderma,' I will do it in any way possible."

Rachelle's Story
"I love you mom"

SURVIVIOR
From one voice of survival to another...

My name is Lenora
Hello my name is Lenora Lawhorn. Back in 2000 I was diagnosed with this devastating disease. At this time I knew nothing about it.

Retired teacher not stopping after double transplant
Shalonda Todd was diagnosed with scleroderma in 2005. The disease had attacked her internal organs and lung functions.

Struggling forward
I was diagnosed with Scleroderma last year. It took 12 years for them to find it. I was 16 when they found the reynauds. I am sore, weak and tired all the time.

My Mom Living with Scleroderma
My Mom Byrda Darmis suffers from Scleroderma and I am her caregiver. Together we have a Scleroderma & Autoimmune Related Diseases Support Group in Michigan, 12 & Hoover, St John/Med-education center.

The Journey
I was diagnosed with systemic scleroderma about 4 years ago. The challenges are many and support is not to be found. There are no support groups in my area.

My Life with Scleroderma
By Teresa Nadeau

Always Hopeful
Q&A with Abbey Quinn

My life with Scleroderma
I have had this disabilitating illness since I was 13 but will not let it define me!

Scleroderma
Hi to everyone I was diagnosed with Scleroderma 31 years ago I was 15 years old.

My Mom
My name is Adrina and my mom Lisa has this sickness she's very sick and it breaks my heart that I can't help

I have Scleroderma
The hives and itching are the worst. I take meds every day but I continue to itch.

Mom
Scleroderma has affected my life through my mom. She lived with the disease for 20 years and smiled through almost all of it!

My experience
I was diagnosed at 21 years old after the birth of my first child. I started getting very cold in my hands and started with digital finger ulcers. It was painful, but far more painful when I was diagnosed with progressive diffuse sclerosis.

Holly's Story
It took Tri-State member Holly Counihan over two years to receive a scleroderma diagnosis. Like so many others, Holly spent those years in excruciating pain and confusion. In addition to living with scleroderma, Holly is also an avid traveler and adventurer. Read our interview with Holly in the current issue of Scleroderma Exchange. Below you'll find a short memoir Holly wrote about her journey towards finding a diagnosis.

Writing Through Scleroderma
Lori Carey lives in Middletown, NY, and is the mother of two children. She began to notice symptoms in 2005 and was diagnosed with scleroderma in 2008. Lori recently accepted the role of co-support group leader in our Orange County support group. She was kind enough to answer a few of our questions, which we've published here along with two of her journal entries and one of her poems.

Heidy's Story
Heidy Dornau tells her story to Scleroderma Exchange. In addition to being a scleroderma survivor, Heidy began leading a Tri-State Chapter support group in the Nassau-Queens area in May of 2012.

Amy's Story
December 1997 was the month and the year that changed my life forever. I was thirty-seven years old and I thought I was as healthy as could be. The first hint that something was wrong was when my mother-in-law Erika stared at my legs and asked me why my legs were so shiny and swollen...

Liz's Story: My Second Chance
The first indicator of scleroderma for me was Raynaud's when I was 30 years old and pregnant with my second child in 1996. At that time, I was diagnosed with mixed connective tissue disease, since there were no other symptoms other than an elevated ANA level...

Faces of Scleroderma: Erica and Emily
As identical twins, Emily and Erica grew up doing everything together. But the bond between these sisters became even stronger three years ago when both were diagnosed with the same form of scleroderma within a week of each other.

Faces of Scleroderma: Dr. Giuseppina Alessandra Farina
Giuseppina Alessandra Farina always knew she wanted to be a physician because of her love of visiting with her father's patients growing up. What she didn't foresee were the turning points that changed her path from clinical practice to bench research.

Faces of Scleroderma: Cynthia Maxwell
Cynthia Maxwell wears her scleroderma like a badge of honor.