Alagille Syndrome

NewLife with Alagille syndrome (ALGS) presents unique challenges that extend beyond physical health. Whether you’re adjusting to a recent diagnosis or have been on this journey for a while, you may be confronted with the reality of the mental and emotional impact of this complex condition. Our goal is to help you understand and effectively [...]

NewIt’s natural to feel uncertain or confused if you or someone you love is an older adult living with Alagille syndrome (ALGS). ALGS is a genetic condition that primarily affects the liver, heart, and kidneys, and it can present a unique set of challenges as a person ages. Managing this condition involves addressing symptoms during [...]

Seeking specialized health care for your child can be a stressful experience, especially if it’s for a rare condition like Alagille syndrome (ALGS). You probably have a lot of questions about life for your child with ALGS and depending on where you live, you may have to travel outside of your city or state to [...]

What is ALGS? Alagille syndrome (ALGS) is a rare genetic disorder affecting multiple parts of the body including the liver, heart, skeleton, eyes and kidneys. Symptoms are often detected early in childhood. When it affects the liver, it can lead to cholestatic pruritus which causes abnormalities and reduction of the liver’s bile ducts, according to [...]

Alagille syndrome (AGLS) with cholestatic pruritus is a rare genetic disorder caused by abnormalities in the liver’s bile ducts. It is a rare disease, with only between 3,000 and 30,000 cases in the United States, according to the National Institutes of Health. Structural abnormalities in the liver cause reduced flow of the digestive enzyme bile [...]

Itchy skin is never comfortable. But for people with cholestatic pruritus caused by Alagille syndrome (AGLS), it can be a constant, potentially distressing companion. Thankfully, there are some things to try, in addition to medications that a doctor may recommend, that could help relieve discomfort. AGLS is a genetic disorder that occurs when the liver [...]

Alagille syndrome (AGLS) is a genetic disorder of the liver that develops when bile ducts do not form properly or there are too few of them. Bile ducts are small tubes that allow bile, a digestive enzyme, to pass through to the small intestine. When bile cannot flow freely, it backs up into the liver, [...]

Alagille syndrome is a rare, genetic condition that causes build up of a digestive fluid called bile within the liver. Usually, this fluid leaves the liver through bile ducts; however, in individuals living with Alagille syndrome, there are not enough of these critical ducts. Too much bile then remains in the liver, causing symptoms associated [...]

Imagine taking your child to a new doctor for the first time. You sit in the exam room and give a detailed medical history for their chart. You mention the rare genetic syndrome that your child was diagnosed with in infancy. A concerned look washes over the doctor’s face. “Can you spell that, please?” they [...]

Dear Alagille syndrome, You have snuck into our lives like a thief, determined to cause fear and pain. You shocked us with your presence in our daughter. We weren’t aware of you or the other lives you’d filled. After we discovered who you were, we wanted to deny your presence. You looked far too scary, and [...]