Meet Maddy

My name is Maddy and I am 17 years old. in 2016, I was diagnosed with Autoimmune Hepatitis. Up until that point, I appeared to be a perfectly normal teenager. Looking back however, I realize that I had been living with many symptoms of liver failure.

I had attributed many of my symptoms to being a teenager; fatigue, little to no appetite, a loss of interest in school/friends, and feeling moody or depressed. These were all serious indicators that something much more insidious was going on. They call liver disease the “silent killer” and I believe it since many noticeable physical symptoms did not occur until my liver was in big trouble.

I have always been a low energy person. During childhood, I used to often ask my parents if it was time for a nap or bedtime. I was happy to sit and watch the goings on of my family and nobody thought twice about it. “Maddy is such a quiet girl,” I’d often hear.

With regards to my appetite, it became clear to my mother that much of what she was cooking for me was not being eaten. I had always had quite a healthy appetite…especially for the types of food that have a short shelf life such as yogurt, vegetables and fruit!

Next was the itchiness. I was very itchy, everywhere and frequently. Many had simply suggested that my skin was dry due to the winter, and to try some moisturizer.

Ultimately, if it hadn’t been for my transformation into a human banana, who knows how long it would have taken me for me to be brought to a hospital! The yellow tinge (jaundice) began in my eyes, and was first thought to be due to my recent switch to contact lenses. This was followed by comments from teachers and friends who noticed my “off” colour. One day while driving together, my mother noticed the corners of my eyes appearing yellowish. She made an appointment right away and my family doctor sent us for blood work immediately, believing that I might have contracted a type of hepatitis from some food or drink.

Our doctor had promised to call my mother as soon as possible with the results, but as luck would have it, he came down with a bad flu and was off for a couple of days. We tried to go on with life as normal over the weekend, relaxing at home and on Sunday, headed out to the mall for some shopping. My mother couldn’t shake the feeling that something was wrong. I was noticeably exhausted and complaining of feeling unwell. She decided to take me to the hospital the following day.

I received my first lab result at my hometown hospital. I remember the nurse who came in and told me that she was shocked I hadn’t been sent to the hospital sooner. This began my downward spiral and led me to my final diagnosis.

Overwhelmed by the multiple tests and rapidly declining health, my local hospital organized a quick transfer to SickKids. My family and I were very relieved. My mother insisted on bunking with me in my room every night, and my dad and sister stayed with me until every evening. My parents were incredibly worried and I felt like everything was out of control; it was a very scary time for us all!

The worst were the biopsies. I wasn’t in very much pain, although with all the needles, I felt like a human pincushion (this wasn’t exactly on my bucket list!). It had been close to a month since I was admitted into the hospital, and Christmas was only a few days away when I found out I would soon be sent me home. My family and I were ecstatic.

This next stage was tremendously difficult. I was taking a ton of medication, going for frequent blood tests and still feeling extremely lethargic, sleeping most of my days away. The side effects of some the meds were terrible. I seemed to struggle with either sleepless nights or vivid nightmares. I also felt the need to eat anything and everything day or night (I even stopped wearing my retainer to bed because I was scared I was going to eat it in my sleep!).

To this day, I continue to battle other side effects, such as hair loss, rashes, dry skin, unpredictable appetite, restlessness, and more. I live in the constant fear of developing osteoporosis, leukemia, cancer or of course, needing a liver transplant.

I will admit that life sucked! I was allowed back at school when I felt well enough. Little did I know that the school and teachers were all informed of my illness. It wasn’t long before kids started to look at me weird. After a while, I got into a routine, kept moving forward and did my best in school. Yes, I felt “different”. I never wanted to have sleepovers or go out with my friends—I was too tired and just found it more comfortable and less stressful to be at home with my family.

A year or so after being diagnosed, I began to feel more ownership over my illness. I even gave a speech in front of hundreds of women at a business awards evening, in which I also sang a couple songs and played guitar. My message to the crowd was to accept the things you cannot change, to be thankful for all that you have, and above all, to follow your dreams!

This is the same advice I would give to any child or teenager who is going through liver disease. Sometimes, a disease can make you feel different and alone. But, this experience will only make you stronger. I choose to see my illness in a positive light. Without it, I wouldn’t have experienced the countless opportunities to educate and inspire anyone inside or outside of my community, and of course, I wouldn’t have been able to raise the awareness of liver disease.

Please join me at the Toronto LIVERight Gala on November 15th. Please get your tickets here.