Those who have been impacted by Dyskeratosis Congenita/Telomere Biology Disorders have a beautiful story to share. We want to hear your story and we want others to hear it too. We encourage you to use this forum to share your experiences, with the hope that it will offer encouragement to those who read it, and provide a way for families to connect and support one another. Team Telomere will also honor these stories through social media and printed materials. This forum is not intended as a vehicle for promoting other charities or personal causes. Therefore we ask that your submissions not include solicitations for donations or promotions of any kind. We reserve the right to edit content deemed inappropriate in this regard.
Share Your Story
Amanda Curry
Gene: TERC
My mom passed away when I was 9 from complications of aplastic anemia and liver cirrhosis. During her time, she was only ever told her aplastic anemia was idiopathic. I was diagnosed with Dyskeratosis Congenita (TERC mutation) at 29, after begging and fighting with...
Troy Tillery
Gene: TERC
My Father was the first one of 4 siblings to find out he had DC in 1983 he died in 1985 then my uncle, Aunt and my cousin all succumbed to DC it was not known then what he had the doctors tried everything with no luck. Well fast forward today there are a lot of people...
Christina Coffey Ryan
Gene: TERT
On the 23rd of December 2020 my life changed forever when my mother’s heart stopped beating. At only 58 we were robbed of so many years together, we had so much to look forward to. Spending time with her grandkids, cruises with her husband – her favorite thing to do...
Remembering Alexander Jamie Black
Gene: Unknown
Alexander Jamie Black is a warrior. He is an amazing husband and father of 6 children. In 2016, when his youngest was only 12 months old, he was diagnosed with Aplastic Anemia. He became transfusion dependent and his life changed forever. He always kept positive about...
Hamish Crowe
Gene: TINF2
Hamish was diagnosed with Dyskeratosis Congenita (more specifically Hoyeraal-Hreidarsson Syndrome) at 2 years old following almost 18 months of testing to determine the reason behind his critically low blood counts. Just 4 months after diagnosis, he was admitted in to...
Kyndall Sewing
Gene: Unknown
In June of 2019, at 5 years old, we took Kyndall to her pediatrician because she was covered from head to toe in bruises and petechia. Her bloodwork showed critically low platelets and white blood cells so we were immediately sent to Omaha Children's Hospital. She had...
Skylar Grossberg
Gene: TERC
For generations, my family has suffered from illnesses associated with telomeres disorders. Since the rare TERC gene is a recent discovery, the cause of my family’s consistency with terminal illnesses was unknown for a long time. My father was the first to receive a...
Remembering Josh Friedman
Gene: DKC1
Josh Friedman was born on June 24, 1994 and passed away on November 18, 2011. In between he made countless friends, was a Best Buddy at Unionville HS, an actor in multiple productions including his famous role of Tiny Tim in a Christmas Carol, was a camper at...
Ruthie Gregory
Gene: TINF2
Ruthie is 20 months old. She has recently been diagnosed with DC. More specifically, she has Revesz syndrome. She has many things that led us to this diagnosis. An esophageal stenosis, ataxic movement, balance issues, calcifications on her brain, etc. We are in the...
Send Us Your Story
Each community member who shares their story retains full ownership of it. You have the right to edit your story or request its removal at any time, ensuring that you remain in control of how your experiences are shared. We want to honor your voice and ensure you feel comfortable with how your story is presented.