Long Term Effects

UCD affects more than just the liver. It can cause lasting brain damage from high ammonia levels. Keeping ammonia under control with a proper management plan helps protect memory, mood, and cognitive function.

Most people think a urea cycle disorder, or UCD, is a condition that only affects the liver.

But it might surprise you to learn that the most serious damage caused by UCD actually happens in the brain.

Symptoms like forgetfulness, a short attention span, moodiness, and trouble with problem solving can all result from a UCD.

It all starts with ammonia.

Ammonia can travel through your blood to your brain, and it is harmful to your brain cells.

High levels of ammonia may cause your brain cells to swell and malfunction, which may damage them to the point that they no longer work at all.

It's important to remember that even though you can't see this happening, higher than normal ammonia levels are dangerous to your brain.

One instance of elevated ammonia may not cause a permanent or obvious problem, but the more often your ammonia levels are elevated over time, the more likely it is that damage to your brain will be serious and permanent.

Even if you're not having a hyper anemic crisis, ammonia levels that are high enough to cause symptoms can still lead to permanent damage.

The most common one is ornithine transcarbamylase deficiency, or OTC.

So what can happen when your brain cells are damaged?

You may not notice the effects right away or even realize that they're related to your UCD.

But the problems that result from damaged brain cells can affect your everyday life.

At home, at work, or at school, you may have issues like trouble remembering things, difficulty making decisions, mood swings, and problems with thinking.

Damage to brain cells may also cause you to function at a level lower than a typical person your age.

Keeping ammonia levels low can help prevent damage to your brain over time.

The best way to do this is by sticking to the management plan recommended by your doctor, which may include a low protein diet, dietary supplements, and an ammonia removing medicine, also called a nitrogen scavenger medicine.

Not following your low protein diet or not taking your dietary supplements and medicine even when you're feeling healthy can cause ammonia levels to rise.

It's very important to stick to the management plan your doctor has created for you and to take all supplements and medicines as prescribed.

So remember, the major effects of high ammonia are actually on your brain, which can cause serious symptoms.

Tell your doctor about any and all symptoms you experience, even if you don't think they're related to your UCD.

And make sure you talk to him or her about your management plan and whether you should make any changes to help keep your ammonia levels under control.