Patient Story: PSC and Autoimmune Hepatitis From a Mallorca Vacation

Nobody wants to get sick on vacation; it can ruin a time meant to be fun and relaxing. Unfortunately, Kai McCulloch, a 13-year-old from Scotland, experienced this firsthand. They were enjoying a family vacation in Mallorca in 2015 when they ate a contaminated fish. Upon returning home, their health deteriorated, and they were eventually diagnosed with primary sclerosing cholangitis (PSC) and autoimmune hepatitis.

Kai’s Story

Kai ate the contaminated fish, which was believed to have been stored next to mussels, when they were just seven years old on a family vacation. Now, six years later, they are still experiencing the effects.

Immediately upon returning from vacation, Kai began noticing symptoms like nosebleeds and stomach pain. The McCulloch’s made numerous trips to the doctor to try to find a reason for Kai’s symptoms, but yielded no definitive results. It was not until a biopsy was scheduled that the family was given an answer, and the initial diagnosis was hepatitis A.

When Kai’s symptoms continued to progress after this diagnosis, doctors did more investigating and found that their spleen was swollen. This led them to two new diagnoses: primary sclerosing cholangitis and autoimmune hepatitis.

Kai’s mother, Elaine, says that this experience has “devastated the family,” as they have to watch their loved one endure life-threatening symptoms.

You can read more about Kai’s story here.

About Primary Sclerosing Cholangitis (PSC)

Primary sclerosing cholangitis (PSC) is a chronic liver condition that is characterized by damage to the bile ducts, which become blocked due to scarring and inflammation. Bile then becomes trapped in the liver, which leads to cirrhosis, fibrosis, and eventually liver failure. Males are typically affected by this disease, as only 30% of cases are female.

The early symptoms of PSC are fatigue and itching. As it progresses, symptoms will evolve into pain in the upper abdomen, fever, an enlarged liver, jaundice, infections of the bile duct, and liver failure. The exact cause of this condition is unknown, but it is suspected to be related to viral or bacterial infection. Other possible causes include exposure to toxins or autoimmune issues. It may be connected to various forms of inflammatory bowel disease (IBD) as well, as about 75% of PSC cases also have IBD.

Medical professionals do not have a cure for PSC. Doctors may prescribe medications for itching, vitamins, dietary supplements, and antibiotics. Bile duct surgery is another option, and a liver transplant may be needed if the organ begins to fail.

About Autoimmune Hepatitis

Autoimmune hepatitis is a rare and chronic autoimmune condition that sees the body attack its own liver cells, resulting in inflammation and damage to the liver. Medical professionals are unsure what causes this condition, but they suspect that it is a combination of genetic and environmental factors. Regardless of cause, affected individuals experience fatigue, an enlarged liver, abdominal pain, skin rashes, joint pain, jaundice, a loss of menstruation, and abnormal blood vessels on the skin. Doctors will prescribe prednisone or azathioprine to slow or stop the immune system in its attack on the liver, therefore reducing these symptoms. If one’s case is severe, they will require a liver transplant.

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