My Story with AIH (diagnosed at 14yrs, now 20 yrs old)

It all started with an innocent blood test for a simple check-up. But that test turned out differently than expected. My liver values weren’t right. Doctor’s visit after doctor’s visit, they kept searching for what was behind these strange results. Very odd, since I actually felt perfectly healthy… After about a month, it was time for a biopsy – a biopsy I found deeply traumatic. The adult doctor who treated me back then didn’t really know how to deal with children, which made the whole experience far from pleasant.

Luckily, that situation led me to the doctor to whom I now owe everything - my health, the right support, and even my choice of studies. But back to the story that has shaped my life. It was now official: I was sick, and the illness was called autoimmune hepatitis. From that moment on, this became my label, even though I had never noticed anything before.

The real symptoms only appeared once I had to start taking medication. In my eyes, that medication turned me from a healthy girl into a sick one. My cheeks were swollen, I was exhausted, and I had to see the doctor often. The comments from boys in my class about how I “needed to lose weight” just kept coming. But there was nothing I could do… My weight was perfectly normal, but my face was puffy because of the cortisone I had to take. I didn’t want those pills anymore, because in my mind they only made things worse.

Looking back years later, my perspective on this has completely changed. As much as I hated those pills, they are the reason I’m still standing here today as a 20-year old woman. Right now, I’m as healthy as I can be, with a whole sea of possibilities ahead of me, and all of that is thanks to the medication that keeps me stable and well. This illness has its ups and downs, but nothing will hold me back.

My Story with AIH (diagnosed at 17yrs, now 21yrs old)

Hello!

I am 21 years old, and I was diagnosed with autoimmune hepatitis at the age of 17 on January 20, 2022, after a long process of tests, analyses, and some inner suffering. I confess it was difficult—one moment, I believed I was healthy, and the next, I was surrounded by doctors, questions, and undeniable evidence that I was not.

While waiting for the results, my mind shut down, and every second brought a new question, a new hesitation... But when I finally knew, I felt an enormous sense of relief. I mean, in the midst of such a serious scenario, AIH wasn’t the worst thing that could happen. I didn’t cry; I suffered...

I tried to put on a confident front for those who worried alongside me, for those who cared and always supported me. I am grateful to my parents, who were there for me, whose every glance carried both concern and hope. I am especially thankful to my brother, who inspired me to be brave, who shared stories of struggle and triumph, who didn’t constantly ask what the doctors were saying but instead distracted me from my own pessimism.

I appreciate my family, who always supported me, and my friends and teachers, who never let me lose myself or give up. I acknowledge the remarkable role of the medical team, to whom I will be forever grateful for the speed and care with which they diagnosed me.

AIH, I will learn to live with you! I don’t yet know exactly how, but I believe I won’t be alone! And neither will you...

JOIN ME! SAY IT OUT LOUD: "I HAVE AIH." Now it's your turn to write a letter!

My Story with AIH-PSC Overlap (diagnosed at 15yrs, now 23yrs old)

At the age of 15, I began a journey I never chose for myself. It all started with severe stomach pain. At first, I thought it was “just something with my stomach.” But during the check-up, doctors discovered that my liver values were severely elevated. Soon after, I had a biopsy and received the diagnosis: an overlap syndrome of autoimmune hepatitis (AIH) and primary sclerosing cholangitis (PSC).

Even before the diagnosis, I had noticed that something was wrong. I was often tired, weak, and sometimes my eyes turned yellow – jaundice, as I later learned. As a teenager, though, I didn’t really understand what such a disease meant. All I wanted was for the symptoms to go away so I could feel “normal” again. Only once they subsided did I realize: this illness is not going anywhere.

The first years were marked by treatment with corticosteroids. They worked, but the side effects were hard to bear. Later, I was switched to azathioprine, and today I take mycophenolate mofetil (MMF) still on a daily basis. Every change in medication felt like a new chapter, another struggle, but also a chance to improve my quality of life.

At 17, I transitioned from pediatric to adult care. For me, this was a tough step. I still felt very young, almost like a child, but suddenly I was in a completely different environment. At the pediatrician’s, doctors always asked first how I was doing as a person. In adult medicine, the focus was immediately on lab values, results, and treatment. That shift was difficult, but I was fortunate: my doctor has been fantastic, and I quickly learned to trust him.

Looking back today, I can actually feel grateful. I have never needed a transplant (yet), and my liver values, while sometimes fluctuating, are generally stable. But the hardest transition for me wasn’t medical – it was mental: moving from the idea of “I’m taking medication to get healthy” to “I’m taking medication to stay healthy.” Accepting that truth was difficult, but it taught me responsibility and helped me embrace my condition.

Of course, the disease has influenced my path in life. My dream was to become a pilot but with these medications, that’s not possible. At first, this was a devastating realization. Over time, though, I found new paths and built a meaningful, fulfilling life in other ways.

My story with AIH and PSC is not over – and it never will be. But I have learned something important: you are never just a patient. You are always also a person, with goals, hopes, and a life that means so much more than blood tests and diagnoses.

My Story with Alagille Syndrome (ALGS) diagnosed at 20 yrs, now 27 yrs old

My story begins 27 years ago when I was born without the main bile duct. At the time, doctors believed my diagnosis was biliary atresia. I was first diagnosed correctly when I was 20, when genetic research had caught up. But due to the doctors at the time believing it was a “normal biliary atresia” disease, I had a Kasai procedure at an early age. But it did not work as they had hoped. Therefore, a liver transplant was the only option. 

When I was three years old, I received my first liver transplant. The operation and recovery went as planned, and I was able to return home after about a month and soon back to kindergarten. Four years later, I started school. Toward the end of my first year, my blood tests showed elevated liver values. I was seven years old, and it became clear that I needed another liver transplant. After one and a half years of waiting and being in and out of the hospital almost every day, a new liver became available. Unfortunately, it did not last long. Within 48 hours after the transplant, a major blood clot formed in the main artery of the liver. At that point, I was in critical condition. Without a new liver within a few days, I would not survive. Several of my organs were shutting down: I needed dialysis because my kidneys had stopped functioning properly, my spleen had enlarged by 50%, and part of my right lung had collapsed. Luckily, my luck had not run out yet. After several days at the top of the emergency transplant list in Scandinavia, a suitable liver appeared. Within a week I received 2 liver transplants, the latter being an incredibly high-risk operation. I survived. Recovery took a long time, but things went well for the next few years. During my teenage years, I began experiencing recurring infections in the bile ducts. Those complications are the reason why I am now waiting for my fourth liver at the time of writing this.

People often praise me for the way I live with this disease and all the challenges that come with it. I never quite know how to react, because for me, this is simply my life — I have never known anything else. It is extremely difficult at times, especially now while I wait for a phone call that could come in one minute or in one year. I have to stay ready for both possibilities. Still, I believe that people are incredibly good at adapting to the situation they are placed in. At least, I can see that in myself.

I am 27 years old, and I was born with biliary atresia, a rare congenital liver disease. When I was born, I was the fourth child in Cyprus diagnosed with biliary atresia. The first signs appeared early, prolonged jaundice and pale-colored stools. Thanks to these symptoms, I was diagnosed in time, and at just two months old, I underwent my first life-saving surgery in Manchester. Which gave me the chance to live. Throughout my childhood and teenage years, I traveled many times between Cyprus and London for treatments and hospitalisations. I faced frequent episodes of cholangitis, a serious liver infection that became part of my everyday reality.

At the age of 18, I had to undergo another major liver surgery as my condition continued to challenge my body. At 22 years old, my journey led me to a liver transplant in London. I received the greatest gift of my life. A second chance in life. My donor was a 55-year-old woman who passed away and, through her selfless decision, gave life not only to me but to several others. I carry her gift with endless gratitude and respect.

The transplant was successful, but the challenges did not completely end there. I experienced medication side effects that required changes in treatment, and two years ago, I went through liver rejection. Today, my liver is doing much better. However, I am currently facing some neurological issues that are still under investigation.

Despite everything, I continue with hope, faith, the unconditional love of my family, my husband, my friends and the incredible support of my doctors. I share my story to raise awareness, to offer hope, and to give a voice to a condition that is invisible, yet very real. For every child born with biliary atresia, and for every family walking this path, you are not alone.