Episode 39

Next Steps - A Journey Through CRPS to an Above the Knee Amputee with Whitney Lavender

Jul 16, 2020

34:31

Genetics & Genomics Rare Disease Ehlers-Danlos Syndrome

Episode Description

Next Steps: A Journey Through CRPS to an Above-the-Knee Amputee with Whitney Lavender

Whitney Lavender lives in Texas with her husband and two sons. I discovered her through her advocacy on Complex Regional Pain Syndrome (CRPS). She was taking a walk one day and had an accident that changed her life forever. The accident even led to the discovery of another rare disease she was unknowingly dealing with. Whitney has lived with excruciating pain for years, has been in the hospital alone during Covid and had her leg amputated while isolated from her family. Whitney is an awesome advocate and she's been so brave to share her story along the way.

EPISODE HIGHLIGHTS

How did you enter the world of rare?

After you were diagnosed and the treatment plan wasn't working, what was your mental state?

When did you find the doctor that knew how to help you and what was that like?

Did the two doctors formulate a plan to amputate your leg?

After your leg was amputated, what has happened with your pain from before to now?

How will EDS continue to affect you?

It’s not too late to register for the NORD 2020 Living Rare, Living Stronger Patient and Family Forum streaming July 18th-19th. There's a range of amazing speakers including doctors, patients, caregivers and researchers. There's also a live performance from the cast of Hamilton, so don't miss it! Register here.

LINKS AND RESOURCES MENTIONED

NORD Living Rare, Living Stronger 2020 Registration

https://rarediseases.org/living-rare-forum/

Whitney Lavender on YouTube - Whitscomplex https://www.youtube.com/channel/UCx6jr3lC4yvzjANASsKON1A

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Website

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