It’s called the ‘invisible illness’

Health & Wellness

July 08, 2019

IU Health Hepatologist Dr. Craig Lammert talks about a disease that affects hundreds of patients but often goes undetected – autoimmune hepatitis (AIH).

He’s making it his mission not only to treat a rare disease but to also bring together patients who are diagnosed with autoimmune hepatitis (AIH).

“We want patients to fully understand their disease and become strong advocates for their health,” said Dr. Craig Lammert. “AIH can lead to cirrhosis and even a liver transplant. It’s often referred to as the ‘invisible disease’ because many providers and loved ones don’t understand the consequences of the disease,” said Dr. Lammert.

The disease is challenging to diagnose because there is no one test that confirms AIH. Patients often have a wide variety of symptoms including ones that are not always attributed to liver disease such as fatigue, poor sleep and depression, said Dr. Lammert.

At a recent patient conference hosted by the Autoimmune Hepatitis Association Dr. Lammert asked art therapists with the Simon Cancer Center CompleteLife Program to facilitate a session on art as a form of healing. As part of the exercise, patients created colorful mandalas.

“It’s a holistic approach. I explain to patients we can often control the autoimmune inflammation in their liver with medicines, but we want to explore other strategies to improve their quality of life,” said Dr. Lammert. “Much of the battle is working to improve symptoms of fatigue, anxiety, and depression that we see in many AIH patients.”

What is known about AIH:

  • The disease affects individuals across all races, ethnicities and ages. Dr. Lammert estimates about 450 patients are being treated as part of a local study he’s conducting. The disease is a predominately female illness affecting about 90 percent women and 10 percent men. Some research suggests nearly 80,000 people in the United States are afflicted with AIH. According to the Autoimmune Hepatitis Association (AIHA) diagnosing the disease is often delayed because symptoms and lab results may vary. “It could smolder for years. Patients can present normal liver tests one day and then abnormal the next,” said Dr. Lammert. “We think maybe viruses and environmental pollutants can be contributors.”
  • It’s not a communicable disease. “AIH is a result of a hand that was dealt at birth as well as some environmental triggers. Patients, family members and friends may struggle with the word ‘hepatitis’ as it tends to have a negative connotation. But hepatitis simply means liver inflammation. I recommend that my patients describe AIH as an autoimmune disease to help educate others,” said Dr. Lammert.
  • About 50 percent of patients present symptoms including jaundice and abdominal pain. The other half may have no symptoms. “AIH can behave very differently among specific groups, and a goal is to take an individualized approach to treatment,” said Dr. Lammert.
  • Typical treatment is with lifelong immunosuppressant, but 20% of patients will be hard to treat with medications that are presently available. They may need a liver transplant or remain at a high risk of liver-related death, said Dr. Lammert.

-- By T.J. Banes, Journalist, IU Health.
Reach Banes via email tfender1@iuhealth.org.

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