Help Us Share Good News This Giving Tuesday!

Hi, my name is Jane Howlett. I’m 20 years old and living with Dyskeratosis Congenita. I was officially diagnosed during my sophomore year of high school, right in the middle of COVID, after a long and complicated journey to find answers.

My symptoms started when I was just 8 years old, but at the time, no one realized they were signs of something much bigger happening in my body. During the COVID-19 pandemic, I saw a different pediatrician, a visit that might have saved my life. She ordered bloodwork, and the very next day she called, urging us to see a hematologist.

More tests followed, including a bone marrow biopsy, and my blood was sent across the country in hopes that another hospital could identify what was wrong. When no clear answers came, I was referred to CHOP (Children’s Hospital of Philadelphia). It only took one appointment with the incredible Dr. Tim Olson for him to suspect Dyskeratosis Congenita. After further testing, we confirmed my telomeres were short and finally had a diagnosis.

This Giving Tuesday, I’m asking you to take a moment to consider donating to Team Telomere. Living with this disorder isn’t easy. Some days are mentally and physically exhausting. There is pain. There is uncertainty. And heartbreakingly, there is loss within our community.

But this year has also brought hope which is why the theme of this Giving Tuesday is “The Good News Hour.” There are new trials showing real promise, opening the door to treatments and, hopefully, one day, a cure.

This year, I also started an Instagram and TikTok called “Jane’s Journey” to share my experiences and to help educate others about Dyskeratosis Congenita. If you’d like to follow along, learn more, or simply see what day-to-day life looks like, I’d love to have you there.