Autoimmune Liver Disease Does Not Define Us
American Liver Foundation (ALF) patient advocate, Jontanna Greene, lived the life of a typical all-American high school student. She was a vibrant and vivacious teen who could be found spending time with friends and family, practicing cheering or studying to become a first-generation college graduate in her family.
Jontanna was excited to go into her senior year – and homecoming queen was finally within reach. She had big dreams and there was no stopping her – that is until she was injured during a cheer competition. Jontanna said, “after the accident, I was tired, weak and my skin began to yellow. My mom feared I may have sickle cell disease – a hereditary blood cell disorder that my uncle was diagnosed with as a child – so, I went back to the doctor to have blood work done. The results were shocking: my liver enzymes were in the thousands and my liver was severely inflamed. My doctor suggested I go straight to the hospital and life hasn’t been the same ever since.”
After multiple tests and scans, Jontanna was diagnosed with autoimmune hepatitis (AIH), a disease in which the body attacks the liver. Overnight, she went from a carefree 17-year-old with big hopes and dreams, to being sick and confined to her home. Jontanna said, “It was devastating – I couldn’t cheer anymore, I missed most of my senior year, including homecoming, and the medication I had been prescribed was causing major changes to my body. It felt like I had no control; the only thing I could control was whether or not I took my medication, and for a while, I didn’t. I fell into a deep depression.” In the moment, Jontanna was convinced her lifelong dreams were crushed because of her AIH diagnosis. She said, “Eventually, my therapist gave me an ultimatum – you need to do this or you’re going to die.”
Facts about Autoimmune Hepatitis (AIH)
- AIH is a rare disorder that affects females four times as often as males.
- People with autoimmune disorders are 25-50% more likely to develop another autoimmune condition such as AIH.
- If undiagnosed, AIH can lead to cirrhosis and liver failure.
Jontanna was able to recover and stabilize her health, but at age 23, Jontanna’ s condition took a turn for the worse and she was placed on the liver transplant waitlist. She had only been on the list for about two weeks when she received a call that doctors had a liver for her. She said, “I was with friends celebrating my 24th birthday when they called me, so I arrived at the hospital for my liver transplant in full glam. After my transplant, I felt stronger, healthier and more energetic each day. I felt like a brand-new person and was finally able to see the light at the end of the tunnel. I got on a good health regimen and eventually enrolled back into college. I set a goal to graduate before 30 years old; I graduated a month before my 30th birthday and began teaching kindergarten and third grade immediately after – it was literally a dream come true.”
Jontanna advocates to raise awareness for patients affected by autoimmune liver diseases and for increased funding for liver disease research. Jontanna said, “I lost my best friend, Deja, just two months after my transplant; it was scary and completely devasted me. I wholeheartedly believe that increasing research funding for better preventative care and treatments would benefit the millions of Americans battling chronic illnesses like me. Unfortunately, I have witnessed at least four women pass away from liver failure – all under the age of 30. With more than 100 different types of liver disease, with most being diagnosed later in life, I think the lack of education, care, and treatment the liver receives is extremely unfortunate. I often wonder why I’m still here, so in memory of my friends, and in honor of liver patients everywhere, I’ve decided it must be to advocate for liver patients, share my story and encourage others not to give up. Once you’re on the other side, you can create your own success story. At the time, I didn’t think I had any control but looking back, I had full control of everything! Even though I took the long way, my journey still led me to graduate college, become a teacher and this year, I will celebrate my 11th transplant anniversary and my third wedding anniversary. Having an autoimmune liver disease is difficult, but if you can focus on future goals and how to achieve them, you will have less time to think about the pain and uncertainty of living with liver disease in the moment.”
March is Autoimmune Awareness Month and ALF is committed to raising awareness and helping improve the health outcomes of patients affected by rare and autoimmune liver diseases through educational resources, support services, research and advocacy. Groundbreaking initiatives such as our Pilot Research Awards, and The American Foundation Liver Patient Registry, are creating positive change for liver disease patients. ALF also offers a variety of free support groups, including our Sharing the Journey Support Groups for patients, transplant recipients, and caregivers, each moderated by a licensed social worker. To learn more about autoimmune liver disease or any of these initiatives, visit liverfoundation.org.
Last updated on March 4th, 2025 at 11:59 am