March is Autoimmune Disease Awareness Month
Jontanna Greene lived the typical life of an American high school student. She was a vibrant and vivacious teen who could be found spending time with friends and family, practicing cheer or studying to be a first-generation college graduate. She was excited to be going into her senior year – and homecoming queen was finally within reach. Jontanna had big dreams and there was no stopping her – that is until she was injured in a cheer competition.
“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.”
At just 17 years old, Jontanna was diagnosed with autoimmune hepatitis (AIH). Overnight, she went from a carefree teen with big hopes and dreams to being sick and tethered to her home. “It was devastating – I couldn’t cheer anymore, I missed most of my senior year, homecoming and the medication I was on caused major changes to my body. I had zero control over anything and I fell into a deep depression. The only thing I could control was whether I took my medication or not and for a while, I didn’t.” 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.”
Fast 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.
At age 23, Jontanna’s health took a turn for the worse and she was put 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 out celebrating my 24th birthday when they called me so I arrived at the hospital for my liver transplant in full glam!” Jontanna said, “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 said, “Unfortunately, I’ve had many friends pass away from liver disease and I often wonder why I’m still here. 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 second 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 the uncertainty of living with liver disease today.”
Patients and families struggling with autoimmune liver diseases need our support and deserve better ways to manage their disease. On March 15 and 16, ALF is hosting an Autoimmune Liver Disease Forum – a two half-day virtual event aimed at identifying solutions for improving the health outcomes of individuals with autoimmune liver diseases, specifically PBC, PSC, and AIH.
March is Autoimmune Awareness Month. By making a tax-deductible gift to ALF, you support patients and families like Jontanna’s when they need it most. To learn more, visit our website.