Gilbert Syndrome is a mild genetic disorder in which the liver does not properly process a substance called bilirubin. Bilirubin is made by the break down of red blood cells.

Gilbert Syndrome affects three to seven percent of people in the United States. Gilbert Syndrome is more common in men than women.

Facts at-a-Glance

Gilbert Syndrome is diagnosed more often in males than females.
The disorder affects approximately 3-7 % of the general population.
Individuals with Gilbert Syndrome have elevated levels of bilirubin (hyperbilirubinemia), because they have a reduced level of a specific liver enzyme required for elimination of bilirubin.

Information for the Newly Diagnosed

What causes Gilbert Syndrome?

Gilbert Syndrome is caused by the body having lower amounts of a liver enzyme that breaks down bilirubin. As a result, extra amounts of bilirubin build up in the blood.

What are the symptoms of Gilbert Syndrome?

People with Gilbert Syndrome usually do not have symptoms. Gilbert Syndrome sometimes causes the liver to make too much bilirubin that the person becomes jaundiced (yellowing of eyes and skin).

Certain things can further increase the level of bilirubin in the bodies of those with Gilbert Syndrome:

Being ill
Menstruating
Fasting or skipping meals
Exercising too much

What are the complications of Gilbert Syndrome?

Complications of Gilbert Syndrome may include certain medications causing side effects in people who have Gilbert Syndrome. Talk to a doctor before taking any new medications.

How is Gilbert Syndrome diagnosed?

Doctors usually diagnose Gilbert Syndrome after reviewing blood test results and ruling out other liver diseases. In people with Gilbert Syndrome, liver function levels will usually be in normal ranges except for the bilirubin level. However, the level of bilirubin in the blood may change frequently and a doctor may repeat the blood tests a few times.

How is Gilbert Syndrome treated?

Since Gilbert Syndrome is a mild and manageable condition, it does not need treatment.

Questions to Ask Your Doctor

Will I experience jaundice due to this liver disease?
What kind of routine lab schedule should I anticipate? Should labs be drawn every 3 months, 6 months, annually?
Does my diagnosis get noted in a genetic registry?
Will genetic tests be done to rule out the possibility of other kinds of genetic liver disorders?
Do other members in my family need to be tested?
In what ways will we be managing any symptoms I may experience?

Patient Bill of Rights

As a patient living with a rare liver disease, you have several rights that can empower you throughout your health journey. Although every patient’s diagnosis and treatment plan are different, these rights can help you develop better working relationships with the members of your health care team and determine the best path forward for you. View ALF’s Patient Bill of Rights and information from ALF’s 2022 Rare Liver Disease Summit.

Search for a Clinical Trial

Clinical trials are research studies that test how well new medical approaches work in people. Before an experimental treatment can be tested on human subjects in a clinical trial, it must have shown benefit in laboratory testing or animal research studies. The most promising treatments are then moved into clinical trials, with the goal of identifying new ways to safely and effectively prevent, screen for, diagnose, or treat a disease.

Speak with your doctor about the ongoing progress and results of these trials to get the most up-to-date information on new treatments. Participating in a clinical trial is a great way to contribute to curing, preventing and treating liver disease and its complications.

Start your search here to find clinical trials that need people like you.

Last updated on March 20th, 2023 at 10:48 am