LCFAOD Patients Being Treated with Dojolvi Could Still Face Lifelong Challenges.

Christopher was born 6 weeks premature and was immediately diagnosed with long-chain L-3 hydroxyacyl-CoA dehydrogenase deficiency (LCHADD) thanks to Georgia’s newborn state screening program.

LCHADD prevents the body from converting certain fats into energy that is necessary for daily functioning. Christopher must adopt a lifestyle that requires eating every 2 hours or his body will begin breaking down muscle for energy instead of fat.

In Boston, Tasia spent the first 2 years of her life on a feeding tube. In an effort to live a ‘normal’ life, she carried snacks and Gatorade at all times and was still hospitalized 5-6 due to the severity of her condition. Her LCFAOD was a different kind: very long-chain acyl-CoA dehydrogenase deficiency (VLCADD).

Their story was featured in The Rare Disease Advisor, the web’s premier source of news, perspectives and resources for clinicians who treat patients with rare diseases.

The full article can be found here.