My Telomere Story

My telomere story began in 2021 when I was first diagnosed at Children's Hospital of Philadelphia (CHOP). However, my medical story did not begin in 2021. As long as I can remember, I have been visiting doctors because some part of my body is different. For 8 years of my life it was thought that I had a different disorder. During COVID, though, I was forced to see a different pediatrician, who decided to do blood work. After seeing the results she recommended that we see a hematologist, leading to all the tests to figure out what was wrong.

After seeing a local hematologist, we were then sent to CHOP to see the "expert" who could, perhaps, figure it out. In one two-hour long visit he was pretty confident it was a Telomere Biology Disorder, The doctor at CHOP introduced us to Team Telomere. This community has become my second family, helping me navigate the difficult journey of living with this chronic illness.

With the funds raised, I want to ensure the research can continue to find treatments/cures. As of right now, there is no cure for a Telomere Biology Disorder. I don't think people realize the weight that carries, living your life with an illness that has no cure, just waiting for something to pop up and treat it right away. I am 18 years old, it is hard to think about the fact that my life expectancy is not that of a typical adult.

As someone who has a Telomere Biology Disorder, I am asking for your support in donating to Team Telomere. My goal for Giving Tuesday is $300!

It is hard to navigate a "typical" teenager's life with a life-limiting illness. I hope you choose to support me and my telomere family.

Jane Howett