Episode 131

Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents

Apr 21, 2022

34:16

Genetics & Genomics Rare Disease Genetic Testing

Episode Description

ONCE UPON A GENE - EPISODE 131

Kelley Coleman - Author of You will Feel Better - A Guidebook for Rare Disease Parents

Kelley Coleman is a mom and writer who is creating a series of books and other helpful resources for parents who are raising kids with disabilities. Be sure to tune in if you've been thinking about adding a service dog to your family because Kelley shares her experience of growing their family by one service dog named Heddie.

EPISODE HIGHLIGHTS

Can you tell us about your upcoming book release?

The book is called You Will Feel Better which is an honest, real-life guide to doing life with a child with a disability. It's an actionable guide, a handbook that includes step-by-step questions and templates. My goal is to have my book in every doctor's office so when a family receives a diagnosis, there's a starting point for the parents.

What have you discovered you shouldn't waste your energy on?

Google. If you are going to research things online on your own, be very focused, determine your best resources and know when to stop. I'm a compulsive list maker and it's helpful to make lists of what I can control and what I can't control. If something isn't controllable, let go of it so you can zero in on what you can control and what you want to be doing.

When did you become connected with the Undiagnosed Diseases Network and what has your experience been?

We first connected with them through our geneticist. It's been a great opportunity for us to get genetic testing and connect with a community without a diagnosis. There's a possibility that dots can be connected by way of other families or doctors with such a far-reaching network. I believe if we are to get a diagnosis, the UDN is our path to get it.

CONNECT WITH KELLEY

Website

https://www.kelleycoleman.com/

Facebook

https://www.facebook.com/kelley.coleman.56

Instagram

https://www.instagram.com/hellokelleycoleman/

LINKS & RESOURCES MENTIONED

Canine Companions

https://canine.org/

Varient App

https://www.varientapp.com/