Help support the TBD Community!

My family’s Dyskeratosis Congenita story began in the early 1980’s when my brother Robert was diagnosed. He had some mild symptoms that were not concerning to doctors and remained relatively ignored until 25 years later when our brother Richard, who had similar symptoms, was diagnosed with Aplastic Anemia as a result of the Telomere Biology Disorder. We lost both of my brothers in their mid-30’s, and our mother in her mid-70’s, to Pulmonary Fibrosis.

Our medical odyssey spanned decades, and while we had a diagnosis early, an uneducated medical community dismissed possible opportunities for earlier intervention. When we looked back at my brother Robert’s medical records we saw a note from his initial diagnosis which read, “Did not tell mom the dire news.”Our pediatrician chose not to inform us what having DKC really meant – presumably because, at the time, there were no treatments available. We went on with our lives lacking any basic information or understanding of the disease.

My experiences have made it abundantly clear to me that families with rare diseases like DKC and other Telomere Biology Disorders (TBDs) are in desperate need of support and information. Team Telomere was formed to fill this gap. The mission to provide assistance in a variety of forms to families worldwide affected by DKC and TBDs, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers, is near and dear to my heart.

I joined the Team Telomere Board to pay forward the caring and kindness I’ve received from Team Telomere and others. I am determined to help propel this organization to help families who are experiencing what my family did to ensure nobody has to navigate this diagnosis alone. By providing community support, resources to educate the medical community and empower the patient voice, and urgency to propel research for treatments and a cure, Team Telomere is moving mountains. Please join me in supporting our community.

Allison Kiene