Emma Mendelssohn’s life was upended after a misdiagnosis of the flu led to the discovery of autoimmune hepatitis, a rare and incurable liver disease. Learn about her inspiring journey and fight for survival.
What began as a typical teenage flu turned into a life-altering diagnosis for 15-year-old Emma Mendelssohn. A homecoming dress picked out, a packed school calendar, and all the excitement of teen life quickly gave way to a reality no one could have prepared for. When Emma’s skin started changing color for the second time in six months, what she thought was just another passing illness soon became the beginning of a battle for her life.
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The Yellow Warning Sign
It all started in May 2018. Emma, a sophomore juggling school, sports, and the excitement of summer, noticed a strange yellow tint to her skin. At first, she dismissed it as nothing more than a fleeting oddity. After consulting her doctor, who advised her to monitor the situation, the yellow hue faded, and Emma moved on with life, assuming it was nothing more than stress or perhaps a mild flu. But in October, as homecoming approached, the yellow tint returned – only deeper and more pronounced.
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@justembaswrld worth a shot hit my line @mercedesbenzusa #fyp #landrover #mercedes #mercedesbenz #fyp ♬ Two Weeks – Grizzly Bear
By the time of the school event, Emma felt utterly drained. “This isn’t normal,” she thought, recognizing that something far more serious was at play. A visit to the doctor followed, but while most of the blood work came back normal, one result remained pending. By Wednesday, Emma was rushed to the emergency room, where her liver enzymes were alarmingly high, signaling a medical emergency.
Homecoming Weekend Turns Into a Nightmare
@justembaswrld tru #fyp #livertransplant #autoimmunehepatitis #chronicillness #recovery ♬ Our Love Was Beautiful – Instrumental Version – Straight White Teeth
@justembaswrld to make a very long complicated update/explanation short #fyp #foryou #chronicillness #chronicillnessawareness #autoimmunedisease #livertransplant #liverdisease #liverrejection #sickomode ♬ original sound – Noah Kahan
@justembaswrld♬ original sound – emma
Emma never expected Halloween week to end in a hospital. What she thought would be a quick checkup turned into a race against time. Doctors discovered that her liver was failing, and the only way to save her life was an urgent transplant. At the time, she thought she was just dealing with a bad stomach bug. “I didn’t think I was dying,” she recalled. But tests confirmed otherwise. Emma was diagnosed with autoimmune hepatitis, a rare and incurable disease where the immune system attacks the liver.
To make matters worse, Emma also had Hashimoto’s disease, an autoimmune condition affecting the thyroid. Without a transplant, she had just one week to live.
“I was like, ‘Yeah, those odds are pretty self-explanatory. Put me on the list,'” Emma shared.
What Is Autoimmune Hepatitis?
@justembaswrld this is so mich harder than i thought #autoimmunedisease #chronicillness #fyp #foryou #sickomode #livertransplant #chronicillnessawareness ♬ original sound – emma
@justembaswrld #fyp ♬ original sound – emma
Autoimmune hepatitis is a rare and chronic liver disease in which the body’s immune system mistakenly targets and attacks the liver cells. The inflammation caused by this attack can lead to scarring (cirrhosis) and, if left untreated, complete liver failure. Early stages of autoimmune hepatitis may present no noticeable symptoms, which is why it’s often undiagnosed until it’s too late.
Symptoms include fatigue, joint aches, skin rashes, and jaundice (yellowing of the skin, as seen in Emma’s case). The disease is most common in women, with studies showing a four-to-one ratio compared to men. Though treatment can sometimes result in remission, there is no cure, and most patients will need lifelong medication to manage the disease.
@justembaswrld I luv Philz #philteredsoul #philz #philzcoffee #coffee ♬ You Make Me Feel Loved – montellfish
@justembaswrld breakfast and mini update #autoimmunedisease #chronicillness #fyp #foryou #chronicillnessawareness #livertransplant ♬ original sound – emma
For Emma, her liver was already too damaged for medication alone. She was placed on the transplant list, and within days, she received a life-saving liver transplant. But this was just the beginning of her long and difficult journey.
Life After the First Transplant
The transplant saved Emma’s life, but recovery wasn’t easy. She had to relearn basic movements, even something as simple as turning in bed or walking. The procedure itself went well, but a complication during the organ extraction caused further setbacks. The bile duct was damaged, leaving Emma in pain for months. Healing was a long and grueling process, taking almost three years before Emma began to stabilize.
She went on to finish high school and attend college, but life with a transplanted liver was never simple. The constant monitoring and the threat of relapse lingered in her mind.
The Return of the Yellow Tint
@justembaswrld take my morning meds with me #chronicillness #fyp #autoimmunedisease #chronicillnessawareness #livertransplant #foryou ♬ original sound – emma
By her junior year of college, Emma knew her body well enough to recognize when something was wrong. The yellow tint returned, signaling a potential problem. After further testing, doctors discovered that her liver was failing again. Even after multiple procedures and treatments, her body wasn’t responding as expected.
It wasn’t until doctors considered a rare diagnosis, donor-mediated rejection, that Emma’s team finally pinpointed the cause of her worsening condition. Despite being told that no one with her condition had ever experienced this before, Emma’s diagnosis was confirmed.
A Treatment with No Promises
Emma was placed on a rigorous immunotherapy treatment — a combination of drugs usually used in cancer care. The treatments were harsh, leaving her weak and sick for days at a time. Along with the physical toll, Emma was also at risk for Epstein-Barr virus, which could lead to lymphoma. Yet despite these risks, Emma refused to give up.
“I didn’t think I was fearless,” she said. “I wasn’t ready to go.”
Her determination paid off. After eight weeks of grueling treatments, she was stable enough to consider her next steps.
Choosing to Fight for Herself
At this point, Emma had learned a critical lesson: survival wasn’t just about fighting the disease—it was about living with it. There would be no cure for autoimmune hepatitis, only management. With each setback, Emma learned to focus not on what she couldn’t do, but on what she could.
Her friends Molly and Riley, who saw her struggle firsthand, founded a nonprofit to raise awareness about autoimmune liver diseases and support further research. Emma’s strength wasn’t just in enduring her illnesses; it was in her commitment to show up for her life—on her terms.
A Quicker Recovery and a New Normal
Emma’s second transplant was smoother than the first, and her recovery was faster. Though she still faced medical limitations—no skydiving, no swimming with sharks—she had learned to make peace with these boundaries. “I guess I’ll have to settle for virtual reality or something,” she joked.
Today, Emma is navigating a life that will always include autoimmune hepatitis, but she remains hopeful and determined to live fully, despite her condition. “You figure out how to play your hand,” she said. “And that’s exactly what I’m doing.”
