Spreading Awareness with Rodrigo Colon

Rodrigo Colon sat down with Lori Kobular on his podcast, Own Your Career Special, to discuss her experience with Turner syndrome and the importance of awareness that truly impacts the lives of women.

When Rodrigo’s granddaughter, Lily, was diagnosed with Turner Syndrome, his first reaction was, “What is that?”

Rodrigo Colon
Lori Kobular

What is Turner Syndrome?

As Lori explains, Turner syndrome is “When a female is born missing either partial or all of her second X chromosome… It’s nothing that’s genetically passed on; it’s just something that happens at conception.”

Turner syndrome affects over 2 million women and is crucial to detect as early on as possible from the child’s birth due to the comprehensive healthcare needed.

“It leaves most women with short stature and other physical disabilities… some have hearing loss; some have problems with their eyesight. There’s a whole range of medical issues,”
Lori adds on.

More specifically, these range of medical issues involve a wide area of conditions from the kidneys, to the thyroid, to hearing, to cardiovascular abnormalities, to learning disabilities, infertility, and more. In other words, it emphasizes the signifcance of spreading awareness.  

It’s February, TS Awareness Month

You might be wondering, what makes February the month for Turner syndrome Awareness? In the podcast, Lori explains how “February is the shortest month and that’s the most known characteristic of Turner syndrome women.”

This month is dedicated to joy and admiration for women with Turner syndrome in their survival and strength. And you can be the change for women with Ts that need your help to survive!

The Importance of TSF

Parenting and having a newborn is difficult enough. Then, add on the uncertainties of your newborn’s health and finding out a diagnosis of Turner syndrome, which you’ve never heard of.

This is the reality many parents face – feeling lost.

Lori’s experience with her daughter, Julie, reflects this truth.

“We went to the library and looked up.. medical journals and we were horrified when you read all the things that could possibly be wrong.”

Lori continued,

“Most of the doctors we went to didn’t know of Turner syndrome. If they knew of it, it was just a little paragraph they read in their medical books when they were in college…

When I went to Turner Syndrome Foundation, it was different.”

TSF puts their community first, offering all resources for free along with personalized support. Any information we know is available for anyone and everyone to see. Understanding and knowing the many experiences and stories patients have held is what drives TSF to ensure we are there to help.

But we can’t do it alone. 

It’s Your Turn to Help Spread Awareness

It may seem impossible to make a change when you’re just one person. But you can make a difference. 

A simple way to help is by taking part in the card auction going on right now! Organized by Lori, the auction’s proceeds help support TSF along with the talented artists who are personally designing each card. 

“It [The auction] is used to get more education out there…We [TSF] do not get any government funding. We just survive on donations from individuals and from businesses,”

explained Lori.

With 600-700 cards on the auction site to choose from, just one donation would help change another life.

A final thought to leave you with in helping to spread awareness:

“It’s a lot of work, but it’s an operation of love” – Lori Kobular

Take a look at some of the cards available to you RIGHT NOW with Lori!

Don’t lose your chance to buy a personalized card and help save a life.

    • Auction Ends: Feb. 14 at 9:00 PM EST
    • Cards will be labeled in categories.
    • Starting bid is $5.00.

Written and Designed by Riya Ajmera, TSF Blog Coordinator.

© Turner Syndrome Foundation, 2023

Leave a Reply

Shopping Cart

Discover more from Turner Syndrome Foundation

Subscribe now to keep reading and get access to the full archive.

Continue reading