Alex the Great and LCHAD

Episode 66 October 05, 2022 00:25:51
Alex the Great and LCHAD
Energy in Action by MitoAction
Alex the Great and LCHAD

Oct 05 2022 | 00:25:51

/

Show Notes

ENERGY IN ACTION - EPISODE 066

Alex the Great and LCHAD

 

Alex is in her second year of college at Texas Tech where she is studying human development and family sciences. She also has LCHAD, a long-chain fatty acid oxidation disorder. 

 

EPISODE HIGHLIGHTS

 

Can you introduce yourself and share more about LCHAD?

I'm 20 years old and a sophomore at Texas Tech University. LCHAD is a rare genetic metabolic disorder that prevents me from using fat for energy. I eat a low fat diet because my condition prevents my body from breaking down long-chain fats. I take supplements that have fats my body can use and I include limited essential fats. 

 

How do you manage your way of eating?

I've known of my disease my whole life, so I've had a lot of experience reading nutritional labels and eating the right diet for me. That has allowed me to go to restaurants and order food that is within my limitations. I use alternatives like powdered peanut butter instead of jar peanut butter so I can eat a lot of typical fatty foods without being too restrictive. On campus I am able to eat in the dining hall and request foods be prepared in a way that I can eat them, but there's also a dietitian on campus who keeps a nutrition log I can refer to when I need to. 

 

What is your advice for other rare disease students considering going away to college?

I was very determined, so it's worth trying, taking on a little more responsibility and going after dreams. It takes work to manage rare disease at college, but it's doable. Plan with your parents to make sure there are people to support you while you adjust.



CONNECT WITH MITOACTION

Website

https://www.mitoaction.org/

Facebook

https://www.facebook.com/mitoaction

Twitter

https://twitter.com/mitoaction

Instagram

https://www.instagram.com/mitoaction/

LinkedIn

https://www.linkedin.com/company/mitoaction

 

Other Episodes

Episode 16

March 12, 2021 00:38:32
Episode Cover

The Effects of Having a Diagnosis of TK2

Meet Mark Jensen and Dagmar Amtmann and learn about their research study with Zogenix!

Listen

Episode

November 20, 2024 00:15:10
Episode Cover

Our Space: Building Community for Young Adults with Mitochondrial Disease

In this episode of Energy in Action, host Marcy Young sits down with Alex Salser, a passionate advocate and volunteer with MitoAction, to discuss...

Listen

Episode

December 18, 2024 00:32:26
Episode Cover

Dateability: A Dating App for the Disability and Chronic Illness Community

In this episode of Energy in Action, host Marcy Young sits down with sisters Jacqueline and Alexa Child, co-founders of Dateability, the first dating...

Listen