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
Halley Flory
Gene: TERT
In 2024, our family learned that a genetic mutation had been quietly passed down through generations. The news came through a relative who had been tested, and once we understood what it meant, many of us began the process of getting tested ourselves. In September of...
Charley Larson
Gene: TERT
Charley was born at 32 weeks weighing 2lbs 6oz. Although she was small, since the very beginning she has been determined. Requiring CPAP to help her breathe after birth, after 8 hours she decided enough was enough, ripped off the mask, and never needed it again. This...
Gerald Wysoczynski Jr.
Gene: TERT
Hi, my name is Gerald Wysoczynski Jr. I live in Dallas, Texas, and I was diagnosed with Dyskeratosis Congenita (DC), a Telomere Biology Disorder (TBD), at age 31. But my story began long before that. As a child, I experienced esophageal strictures, abnormal skin...
Max Hilton
Dyskeratosis Congenita
My son Max was born early and we thought that was going to be our biggest hurdle. Consistent low platelet levels lead us to being cared under Great Ormond Street Hospital in London. After months and months of checks and test we received the news that Max was diagnosed...
Cate Hargett
Gene: Unknown
Although 11-year-old Cate has struggled with bone marrow failure all of her life, we only recently learned that she has very short telomeres. As a baby, Cate was transfusion dependent, and her doctors thought she might have Diamond Blackfan Anemia. Later, as...
Julian Bukowy
Gene: DKC1
There was no indication that we would have to face this cruel disease. Julek was an extremely premature baby whose difficult birth was the beginning of this sad diagnosis: Hoyeraal Hreidarsson syndrome. We knew nothing about this disease, except that Julka's cousin...
Marcelina Opolska
Gene: TINF2
The story of our daughter Marcelina – breaking our hearts and taking away our hopes… Not long ago I was sure that I am mum of three healthy, wonderful and dream daughters and there was nothing foretold a tragedy. Our third daughter Marcelina was born on 12th February...
Damian Carbajal
Gene: TERC, RUNX1, U2AF1
Hi, my name is Damian. I'm originally from Tucson, Arizona. After high school I joined the Air Force to work on RADAR jamming systems for fighter jets. I embarked on this adventure healthy and with no conditions in August of 2011. In 2017 I felt as if I plateaued in a...
Diana Papazian
Gene: TINF2
Bonjour, Diana est atteinte d'une téloméropathie , le diagnostique est tombé il y a un an. Elle avait quelques pétéchies et une prise de sang à révélée un niveau de plaquettes extrêmement bas (17000). On n'a cru d'abord à un PTI et les examens complémentaires ont été...
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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.