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
https://www.facebook.com/mitoaction
https://twitter.com/mitoaction
https://www.instagram.com/mitoaction/
https://www.linkedin.com/company/mitoaction
ENERGY IN ACTION - EPISODE 104 Courageous Parents Network Blyth Lord and Liz Morris join me from the Courageous Parents Network, an organization that...
For parents living with mitochondrial disease, one of the hardest conversations to navigate is how—and when—to talk to your kids about your diagnosis. In...
Host Marcy Young sits down with Cristol Barrett O’Loughlin—founder and CEO of RareGivers—for an honest, uplifting conversation about what it really takes to care...
