Understanding the Condition
Most people have never heard of LCHAD.
We hadn't either—until it became part of our everyday life.
Long-Chain 3-Hydroxyacyl-CoA Dehydrogenase Deficiency (LCHAD) is a rare genetic metabolic disorder that affects the body's ability to break down certain fats for energy. It is part of a group of conditions known as fatty acid oxidation disorders (FAODs).
Because the body cannot properly convert long-chain fats into energy, individuals with LCHAD are at risk for serious medical complications—particularly during periods of fasting, illness, or increased physical stress.
That might sound technical, but here's what it really means:
When the body runs out of quick energy—during sleep, illness, or even just playing hard—it normally turns to fat for fuel.
Jillian's body can't do that.
Instead of creating energy, her body begins to shut down.
For someone with LCHAD, something as normal as:
…can trigger a metabolic crisis.
These episodes can lead to:
It's not just a condition—it's a constant balancing act.
Managing LCHAD means:
There are no days off. No "we'll deal with it later."
Every decision matters.
And even when everything is done right… the risk is still there.
In individuals without LCHAD, long-chain fats are broken down and used as a key energy source—especially between meals or during times of increased demand. In individuals with LCHAD, this metabolic pathway does not function properly.
As a result, the body cannot reliably access fat for energy, leading to energy deficits and the buildup of toxic byproducts. This can place strain on multiple organ systems and increase the risk of metabolic crises.
LCHAD can affect individuals differently, but possible complications may include:
The severity and frequency of symptoms can vary widely and often depend on how well the condition is managed.
Managing LCHAD requires constant attention and careful planning. Treatment typically focuses on preventing the body from entering a metabolic state where fat breakdown is required for energy.
Management strategies may include:
Even with careful management, unexpected illness or physical stress can trigger complications, making vigilance a daily requirement.
Because LCHAD is extremely rare, research into long-term outcomes, improved treatments, and potential cures remains limited. Much of the progress that has been made has relied on private funding rather than large-scale public investment.
There is no cure today—but there is hope.
Continued research is critical to:
This is where organizations like RISE for LCHAD play a vital role.
This isn't just about awareness.
It's about giving kids like Jillian a future that isn't defined by limitations.
It's about fewer hospital stays.
Less fear.
More normal moments.
And one day—a cure.