Tell us your story
If you or someone you know has liver disease, talking about it publicly might be a little scary. And yet, sharing your story invites others to share their stories and together you help create a more realistic picture of the life-altering impact of liver disease. It is the real stories behind liver disease that ignite passion and demonstrate to individuals, governments, corporations and media that this is a health issue that deserves more attention and investment.

In this special section, we invite you to share your personal experiences with liver disease. Your story may give hope or inspire others to seek help, volunteer or give.

Click on Share Your Story below to get started.

PATIENT
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my story

My sister got sick and was hospitalized. They couldn't figure out what was wrong and took blood work because the only symptom she had was diabetes and was very tired. At the beginning they were not sure what they were looking for. Next thing she knew she was unable to care for herself, she lost a lot of weight until she was just skin and bones so she moved in with my parents. My mother took care of her the last three weeks of her life. Her legs started to be weak and my mother was overwhelmed, so we took our turns taking care of her and finally when we...  Read more

Fighting To Beat Fatty Liver Disease

My name is Belinda and this is my short story on my liver disease. Last year a lot happened to me, from dealing with a bad car accident that my mom, grandma, and I were in to having a hysterectomy. Then months later I found out in late summer/early fall that I was having problems with my liver. My liver enzymes were high then I was diagnosed with type 2 diabetes. I am not obese to say the least. I know I have to lose some extra pounds like any other Canadian out there that always tries to lose weight. For me I have trouble loosing weight cause of my metabolic disorder/PCOS...  Read more

Battle against BA

My daughter, Seanen Megan, has been diagnosed with biliary atresia. She got jaundice during the first week after birth and eventually it was gone. But a few days before she turned 2 months, I noticed that she was jaundiced again, her eyes were yellow, even the inside of her mouth was yellow. I immediately told her pediatrician about this. She required a bilirubin test and the result was high. We were referred to a pedia-hepatologist (we only have 1 pedia-hepa doctor in our country) which immediately told us that our daughter should undergo liver biopsy. The...  Read more

I'm Angry

I never asked for this. I never wanted this. I always thought I was going to die young, but not from some liver disease. I want to have kids, travel, retire. I want to experience everything this world has to offer, and not have to worry about a common cold landing me in the hospital, or being poked numerous times a month watching my LFT's rise. My Gastroenterologist told me NOT to get pregnant, and that I shouldn't get pregnant because it would be too dangerous for me and the fetus. This devastated me, and still does. I am not getting any younger, and I will never experience...  Read more

count dracula and his demons

Hi my name is Randy and I have cirrhosis caused by drugs at a young age. I ended up with hepatitis C.  Now that I'm 47 years old, the abuse I put my body through is taking its toll. My liver is almost done. I have bilirubin. Doctor tells me I am diabetic and most of all I was told I need a liver transplant. The only luck I have is that I'm still here .Take my advice, pain really does hurt  -- not only me but my family. NOW comes the wait for what's next - - so good luck and good bye.

I am writing this second part as I have now been told that I have liver...  Read more

PBC

It's been quite a while since I last shared my journey with Primary Biliary Cirrhosis. A lot has happened since then! Since my last entry my bilirubin levels continued to increase to the point I was placed on the 'wait list' in early February. February was a very trying month, I thought I was suffering from a lung infection as I couldn't take a deep breath and my appetite disappeared. After a visit to my GP it turned out I was having an episode of ascites and the fluid in my abdomen was pressing up on my lungs thus not allowing me to breath properly. I had gained about 1...  Read more

We all need support!

I am a single Mom turning 58 this month. I was diagnosed 10 years ago with Hep C, I did treatment, but relapsed. I have 3rd stage cirrhosis now, really need this treatment to work. So, now I am trying the Victrellis,,, rough, rough, treatment, but it has to work!  Read more

Only in Canada Eh?

I have Hep C. Was diagnosed in a routine elevated liver enzyme test in 2007. I was shocked, Geno 1 2 mil viral load, (what ever that meant at the time) I had had My tonsils out at 17, had 2 very healthy babies, had old fashioned gall bladder surgery, routine dental work and gone for regular medical/blood work all my life. I started treatment right away as my liver was showing signs of cirrhosis and after a biopsy it was confirmed. I am not over weight, I do not drink, I exercise, eat right and have worked hard all my life. No sense in 2013 saying why me......but I can ask...  Read more

fedup

I was diagnosed with Hepatitis C and was informed it could be treated but was expensive with a variety of side effects. At the time I declined the treatment as I did not feel I would be able to run my business and was told that some people go through life without knowing they even have Hepatitis so I was not too concerned at the time. My liver biopsy also did not raise too much concern with my doctor. In 2009 I shut down my business so that I could take the treatment. At that time I wanted to take a holiday to Mexico as I still had to wait another 3 months to see the...  Read more

My Poor Sick Liver

I have cirrhosis of the liver. I was just recently diagnosed. I have not had a drink of alcohol for 17 years by choice. It did nothing for me and so I chose to not drink it. I noticed over the years that I have suffered more and more fatigue, depression, "foggy brain", and severe joint pain. I was diagnosed with hemochromatosis this past fall. My ferritin was 5,160. My biopsy showed that my liver was "blue" with iron. I have had endoscopic examinations and had three esophageal varices banded off on the first one. # 2 was ok and that was a relief. I have just had...  Read more

Teenager problems

Hello. My name is Sampson and I have recently been diagnosed with Hepatitis B. I contracted this by having unprotected sex with my boyfriend.  Hepatitis has changed my lifestyle completely. Everyone makes fun of me at school, but I know I'm not alone in this fight against it.  Read more

Cured in between treatments

Started treatments  in 1998,  completed 2, stopped 1/3 due to possible retina damage. About to start 3rd treatment 48 weeks but was emailed with the most amazing news I've ever heard. From 23,400,000 viral load to zero, with great thanks to the Jewish General Hospital in Montreal,PQ  and a special thanks to Doctor Hilzenrat and co-workers.  Read more

Get checked!

I don't know if I can fully write "my story" as I am still having a great deal of trouble accepting this death sentence. For others, it may not be a death sentence however, for me ... Anyone just learning about this "condition" will learn, that it is extremely important to see your doctor regularly and undergo any tests since this "condition" will show signs at a very late stage. I didn't do this partly because I thought I lived a relatively healthy lifestyle, ate properly, exercised regularly and could move mountains, and thought things were fine particularly since I...  Read more

My Hep C Journey

I was 20 years old when I was diagnosed with Hep C. As a teenager I struggled with alcohol and drug addiction. On a few occasions I used drugs intravenously. I got tested after my sister was diagnosed. She was the only person I ever shared needles with. I was shocked to find out I had the disease. It was 1999. I was 3 months clean and sober when I received my diagnosis. Back then treatment in my area was offered only to people who had elevated liver enzymes and for whom the disease had progressed. I was deemed too healthy for treatment and therefore had to learn to live...  Read more

Fighting AIH

In reading through the stories of others with AIH, I can't help but notice the similarity in first having flu like symptoms - I too started this way in late 2010. After bloodwork was done in early January of 2011,  I was told I suffered allergies and took several meds for a month. I was cured but as the year progressed the fatigue I experienced was unusual. The onset of my period only made things worse... Then in August  the same year I began to notice a nausea after every meal, extreme fatigue and yellowing of my skin and eyes, my urine was orange too!...  Read more

Auto HEP

It was five years ago now that I was diagnosed with Autoimmune Hepatitis. I was fine and then one day I started to feel like I had the flu coming on. As a typical woman I just keep going and didn't think it was bad enough to go to the doctor. My husband one night noticed that my eyes were yellow and in fact my whole body was yellow. I was soo itchy. He made me go to the emergency room. They knew it was my liver which frightened my family and doctors -  no one could tell me what was going on. I was sent home and an appointment was set with a liver specialist....  Read more

The pain won't go away

Hello, my name is Audrey. I am a 26 year old finishing my degree in education. I've always been the outgoing type of person doing a million things at the same time, but that all stopped in January 2010, when I found out I had Focal nodular hyperplasia. At first the doctors told me it wasn't a big thing, that I could live my entire life normally without worrying about a thing. But I kept telling them that the pain was unbearable. At first, they didn't believe me, as if, taking meds and spending my days in the hospital was my idea of fun. So I went back to the hospital,...  Read more

Autoimmune Hepatitis - Accepting that I am different

It was a cold and snowy day in November. I remember because the frosty white ground seemed to make my eyes seem that much more yellow. The kids on the school bus stared at me and told me over and over that my skin looked yellow too. Being 12, I did not have the knowledge to even hypothesize what was happening to my body. I went home that day and told my parents. There were a lot of phone calls that evening, but no one seemed to be worried- so I wasn’t either. Now looking back, I knew my parents were concerned but just trying to protect me with their smiles and...  Read more

PBC

Well, I've had all the testing completed and found out I'm a pretty healthy individual other than my liver. In the midst of all the testing my MELD score dropped and it was determined that I wasn't ready for the 'waiting list' yet. Since then my MELD has increased again and I'm currently waiting for my next appointment with my specialist to determine if I will make the list now. In the meantime I'm enjoying time with my family and trying to live life as normal as possible.  Read more

PBC

Over 20 years ago I was feeling a bit tired and since my husband had just been diagnosed with high-cholesterol, I thought I'd better have my blood checked too. After a few more blood tests and a meeting with a specialist I was diagnosed with Primary Biliary Cirrhosis (PBC). Over the past 20 years this disease has progressed slowly but steadily. At first I wasn't on any medication and seeing my hepatology team once a year, then in 1997 I started medication and the doctors appointments and testing became more frequent. I was happily experiencing life's challenges and...  Read more

Living with Autoimmune Hepatitis.

I am a 37 year old mother and business owner.  When I was 32 years old, I became very ill with severe flu-like symptoms, dizziness, vomiting, dark urine, white spots in my vision and jaundice . After weeks of doctor visits and hospital trips, no one seemed to know what was wrong. I was a stay-at-home Mom to my 2 year old son at the time and my symptoms became unmanageble and I was fearful of caring for my son as it was so bad at times I would lose conciousness. I ended up in the ER again and this time I was admitted. I was 2 months into a flare up at this point...  Read more

Survivor of suicide attempt .. to find out I have AIH

May 2005 I had my gall bladder removed ... doc report says he was "surprised at how large my liver was" . My family doc asked if I drank or did drugs. .I said no .. just the occasional glass of wine or drink at special occasions. He dismissed the enlarged liver and did no testing. My Mom got sick with lung cancer and was diagnosed in Sept. 2006. Feeling unwell myself and not understanding what was happening to me,  I kept returning to the doc who put me on anti-depressants because of all the outside stress. Nov 8, 2006 I tried to commit suicide and my...  Read more

Learning to live and die with hepatitis C?

Some 30 years ago I was diagnosed with hep c. My first reaction was, so what? At that time hep c was not as known as it is today. They didn't have drugs like they do now. Owing to the fact that I was still abusing drugs and alcohol I didn't much care. Now today having a sixteen year old daughter and a wife of 26 years, who is twenty years younger than me, I do care and want to cure myself of this virus. I have been on pegatron for 47 weeks through no avail. Now they have a new drug out, but because my red and white cells, platelets are low I am not suitable for this. Can...  Read more

I HAVE FATTY LIVER DISEASE, BUT I WON'T LET IT HAVE ME!

It was May 2010, I was sitting at my desk at work when I started to get dizzy and fade in and out. I was thinking maybe I just needed a break from my computer. I looked down and took a few breaths and when I opened my eyes, I was staring at my feet which were completely swollen, I looked at my hands and they were also swollen. Right at that moment I knew something was not right. I headed to a walk-in clinic since at the time I didn't have a doctor. The doctor at the clinic wanted to run blood work -- I'm good with that. He told me he wasn't sure why I was swollen...  Read more

14 years of LIVER

Just over 14 years ago, I woke up BRIGHT yellow (did I mention i was 10) After almost 4 months and traveling to TORONTO We found out that I had AUTO IMMUNE HEP. Different then all my friends I returned to school. Much bigger then they all last seen me, I was now a subject to BULLYING. (unfair.) The only child in my area with such a disease I was the outcast. (once the incast) Years go on, high school was no different. Still subject to massive bullying and very low self esteem. (No matter what tho, My mom and Dad always made sure I felt loved, safe and special. and NEVER...  Read more

Auto-Immune Hepatitis/Cirrhosis/Liver failure end stage

Hi, I am a 54 year old woman who discovered 3.5 years ago that I had AIH/Cirrhosis/liver failure. I am a Registered Nurse, and had just recovered from removal of my right kidney due to cancer in 2006. At that time I had terrible heartburn and the GP had ordered blood tests. The tests came back with elevated liver enzymes so I was immediately booked for an ultrasound 3 days later. That is when they found the tumor. Had my surgery and it took about 6 months before I could even return to work. So life went on and I went back to work feeling very good. About a year and a bit...  Read more

Walking with my head up high

I am not a writer. I never spoke about Hep C until I realized that I didn't have to be alone anymore. When I found out I had Hep C it was after giving blood to the Red Cross. I was at work and my wife called me and told me that she just opened a letter mentioning I had it. Not just because of that but not long after we whre getting a divorce.  She left me for another man, my world had just crumbled and for some reason I ended up forgetting about it until I met a girl who liked to live on the edge -- drugs, alcohol, sex.  Out of that relationship came a boy -- that...  Read more

25 years and now cured

In 1986 following a bad motorcycle accident I had surgery. Little did I know the blood transfusion meant to save my life carried Hep-C. I found out in 2002 after the postman knocked on my door with a registered letter from HEMA Quebec (Red Cross). The donor had died and they contacted those that had received his blood. Through some research HEMA Quebec knew of the tainted blood when they gave it to me. I took this news very seriously and immediately ensured a healthy lifestyle. My Hepatologist monitored the disease through blood tests every 3 months. When my enzymes...  Read more

Hep C from Rhogam

My name is Mary Ann and I must get this story out to more women. I received shots of Rhogam with all 3 of my children in the 80's. Three years ago a doctor tested my blood because I was complaining of a stomach infection. He sent me for a simple blood test that showed I was infected with Hep C. I have no tattoos nor have I ever been a drug user. I was on the interferon medication and my doctor took me off of it because it stopped working. I then asked for a liver biopsy so I could see how my liver was. I just found out that I am in Stage 4 of the disease with cirrhosis....  Read more

My Story

I learned in 2002 that I had somehow acquired Hep C. Sadly or not, I had been sober over 15 yrs and certainly did not know anything about my liver being silently damaged. In 2004, biopsy showed that I was already at stage3/4. Started treatment in Sept. Didn't have too much trouble with the sides. However, in August 2005, at the completion of treatment - there was the dragon, laughing at us. For the next 3-1/2 yrs, I researched, joined online groups and just about anything that I could find. However, just with the knowledge that I had been so close to full stage 4...  Read more

A Monster in the Basement of my House

Someone once described living with Hepatitis C like living with a monster in your basement. Sometimes it sleeps soundly without a word; sometimes it roars and complains and brings about fever, itching, brain fog, headaches, muscle cramps,insomnia, chronic diarrhea,ascites, fatigue and depression. I've experienced all of this, and many of you have as well. To make things worse for us, the support for Hep C patients lacks the solidarity of the AIDS network, or the warmth we give to those suffering from Breast Cancer. Hep C is a nasty little disease that one is less likely to...  Read more

Living with HEP C

I contracted HEP C Through a blood transfusion in 1976. I had symptons of HEP C starting in early 1980's but was not diagnosed until 2009 when I complained to my doctor about leg cramps and itching. I did know my platelets were low but not why. I also did not know that my liver enzymes had been elevated since 2004. I was concerned about allergies that were getting worse and did research on the internet. I talked to an owner of a health food store about allergies and he informed me that allergies can be due to a liver that is compromised. I went home and looked that up...  Read more

How Advil almost wrecked my life.

Six months ago, an ultrasound found my fatty liver. A blood test confirmed it. I went for another blood test last week and although I'd gained fourteen pounds in six months, my fatty liver was gone. What caused the dramatic improvement from 66 to 38 in blood enzymes was quitting Advil. I had been taking it to six a day for years. I should only have been doing that for six days. I had abused it. My gastroenterologist when he saw I had gained so much weight, told me I was going the wrong way. But the weight was not on my liver. It was not even fat. The medical establishment...  Read more

FATTY liver, FATTY me.....

I recently went in to the doctors for a routine physical and during this they found that I had 4 tumors growing on my liver. I was admitted to the hospital and a ton of tests were preformed, the tumors ended up being begnin as well as inopreable. But what shocked me was the diagnoses of "fatty liver" and the fact that I have 50% liver function. I am 32 and have been a size 16 for almost 20 years.I have 2 little boys who I stay home with during the day and then I work night shift. So i am active, and thats why I was shocked to learn that my liver diease "cure" is to lose 4...  Read more

AIH (auto-immune hepatitis)

Shortly after Easter this year (2011) I had stomach flu, so I stayed home from work. The next day, feeling better, I returned to work. Upon arrival a co-worker of mine stated that I didn't look too well, and my response was that I was unwell yesterday, so it might be something related to that. Later on in the day my co-worker said again that I looked unwell, so I went to the bathroom and looked in the mirror, and I was yellow... like LEMON YELLOW... my skin, my eyes, everything was yellow. I phoned my doctor and they booked me an emergency appointment, and they sent me for...  Read more

Hep C And Liver Disease

Hello I would like to begin with the fact that I was diagnosed with Hep C in 1996.  I am really unsure how I contracted the Hep C. The actual liver diagnosis came I believe around 2003-04. I have had prolonged bouts of severe leg cramping that at times were so bad that I could not stand up or straighten my legs out for a few moments and sometimes have had to lay on the floor & cry.  This sounds kind of crazy for a man to admit this but it is true very sad to say. I have also had severe back pain & when I went to the emergency ward and sat there in agony...  Read more

My journey with HEP C

It all began witht ehbirth of my son 34.5 years ago, when I had a blood transfusion due to placenta previa. I never understand why I unexplained nosebleeds, an increase in allergy sysptons and nothing helped. Sensivities to certain drugs didn't make sense, vision changes, insomnia and the list goes on. In the fall of 2009 I compalined of leg cramps to my doctor and she sent me for blood tests. She just being new told me about my low platelets. That's when I started, doing research on my computer about allergies and low platelets. I had been told by a manager of a health...  Read more

My liver

Hello my name is Nicole, and a newspaper clip inspired me to look in further to things. I'm 26 years old and have a liver disease called primary sclerosing cholangitis. I' ve been waiting for about 2 years now for a transplant but have been put on it and taken off the list quite often. I' ve had pain for about 5 years now and everytime I went to the hospital they would tell me I pulled a muscle or have ulcers, then one day I turned completely yellow and went back to the hospital and asked if a pulled muscle causes jaundice and that's when they finally decided I wasn't just...  Read more