This year we are celebrating the beacons of hope in the scleroderma community. Every person living with scleroderma has a unique journey, and within each journey are moments, people, and experiences that serve as beacons of hope.
Throughout Scleroderma Awareness Month, we are honored to share stories from members of our community who have found hope, strength, and connection along the way. These personal experiences highlight the people, support systems, resources, and moments that have served as beacons of hope through the challenges of living with scleroderma.
From support groups and educational programs to Foundation events, advocacy efforts, family, friends, and healthcare teams, these stories demonstrate the many ways hope can shine through even the most difficult circumstances.
We invite you to explore these inspiring journeys and return throughout the month as new stories are added each week. Together, these voices remind us that while every path is different, we are stronger when we support one another!
Selecha “@SurvivingScleroderma” Allen
For 6 years, Scleroderma has taken me through battles I never imagined. I have faced a stem cell transplant, a stroke, and a heart cath. There were moments when I was tired, afraid, and unsure of what the next day would bring, but through every test, every scar, every hospital visit, every prayer, and every step forward, God kept me here for a reason.
Scleroderma changed my life in ways I still can’t fully explain, but it did not take my purpose, my faith, my beauty, or my fight. It taught me how strong I truly am. It taught me that healing is not always quick, pretty, or easy – sometimes healing is waking up, trying again, praying again, and choosing not to give up.
I don’t just survive Scleroderma – I fight, I hope, I heal, and I rise.
This journey has not been easy, but I am learning to love myself through it. I am learning to stand boldly in my truth, embrace the skin I am in, and remind someone else living with this disease that they are not alone. My story is not only about pain; it is about survival, grace, courage, faith, and purpose.
I am still here.
I am still standing.
I am still healing.
And I am still becoming a Beacon of Hope for someone else.
🩵 I am not defined by Scleroderma. I am defined by my strength, my faith, and my purpose. 🩵
Deborah Forgie
I was first diagnosed in December 2020 at the age of 65. My scleroderma progressed rapidly. I have very dry tight skin. My fingers are bent. I’ve been on different trial drugs with no relief. My hope is to one day be pain-free.
Hoover
“My Dad, Hoover has faced a relentless battle with scleroderma and myositis overlap, enduring pain, exhaustion, and uncertainty that most people could hardly imagine.
There are moments when the weight of it all feels overwhelming, when even the simplest things become difficult, yet he keeps going. He fights through every setback with a quiet courage that doesn’t ask for recognition, only the chance to keep living, to keep pushing forward.
Watching him persevere, even on the hardest days, is both heartbreaking and inspiring. His strength isn’t loud, but it is unwavering, and it reminds me every day what true resilience and love look like.”
– Angela, daughter of Hoover
Janie Brasher
“My mother was a warrior to this disease for about 16 years before she got her victory in Heaven!
She passed on May 22, 2020. She was a beautiful soul and she never let scleroderma define her.
My mom was part of a research study at Vanderbilt University so my Beacon of Hope is knowing one day there will be a cure!
I love reading these stories and seeing such progress and small victories.
None fight alone and my heart and prayers go out to everyone in this fight and their families.”
– Teneya Brasher, daughter of Janie Brasher
Julia Ceresnak
“Julia was diagnosed with scleroderma (juvenile systemic sclerosis) at age 5. I am filled with hope that the National Scleroderma Foundation and researchers around the world are working fervently to help find a cure for Julia and the numerous other people dealing with this rare disease.
Julia is now 15 years-old, and I’m also filled with hope by watching her grow and mature into an amazing young woman. She is smart, caring, friendly, kind and an amazing big sister to her two younger sisters. For someone dealing with a serious and chronic illness, seeing her showering happiness, optimism, and her warm and beautiful smile to everyone around her gives me strength and hope for her future and for the future of other kids dealing with this challenging disease!”
– Scott Ceresnak, father of Julia Ceresnak
Tiffany Shank
I’m Tiffany Shank. I was diagnosed with scleroderma at age 4 in 1989.
My Scleroderma journey has been a whirlwind of ups and downs. I’ve been advocating for myself and others since childhood. Which led me to becoming a Spin-Ssled certified Support Group Leader for Southern Colorado. Volunteering for different chapters and National over the years as I’ve lived all over the country.
Now in Colorado I’m on the walk committee, food fight committee, and volunteer at each event I can attend! I was also named Co-Chair for getting donations and prizes for the events this year with my Chapters Executive Director, Amy Valentine!
We have a solid community here in Colorado. And meeting people online from all over the country has been such an inspiration to me through the years. Every single new warrior I meet whether it’s local or somewhere else in the country, I put together a Scleroderma swag package together and mail it to each individual. It’s important that I continue to do this as it lets people know they are not alone in this courageous fight against such a horrible disease!
Every single voice matters so much and so uniquely! I have been securing proclamations for Colorado Springs for a few years now declaring the entire month of June as Scleroderma Awareness Month! I’ve talked to my state’s senators, house reps, congressmen, governors, our local mayor to help get bills supported and passed! I’ve never let Scleroderma define me; I define it!
Scleroderma has given me just as much as it has taken from me. I make sure to keep that fine balance of good with the bad. Volunteering, telling my story to anyone who will listen, advocating, participating, and communicating have all been different Beacons of Hope to me! As long as I have a voice, I will use it to make differences in our community. I will encourage and inspire others. Volunteering has been so rewarding to me throughout the years.
Together we can make vast changes for our community! #BeaconsOfHope
Barbara Burke
SLICE OF THE SWORD
She was only eight when she first felt the hate.
Did she do something wrong?
Did she not belong?
She tried to please, but still, they would tease.
“Do you ever wash your face?!?”
She felt such disgrace.
As she grew older, she went through different phases…
Hide that visible difference on her face…
Or, let it have open space?
Then she heard, “What happened to you?!?
What to say? She had no clue.
She was alone in the world of “perfect” faces… there were no praises.
Her visible difference seemed a hindrance. She needed to find a way to release her silence.
Balance came unexpectedly… later in life, once she had accepted
that only she could make herself feel rejected.
She was 60 years old when she learned she was not alone!
There are others who have known!
They have also been “there”… and they care!
The path of our facial disfigurement
doesn’t have to be different…
We can share our story, be bold, and uphold.