(Click here to read about ALGS in our Liver Disease Guide)

Hi my name is Claragh and I’m from Ballynoe, East Cork. I was born with a very rare condition called Alagille syndrome (ALGS), a genetic condition which varies in severity from person to person. In my case the syndrome had greatly affected my right kidney making it dysplastic (having increased abnormal cells) and a haven for infection so it was removed when I was only nine months old. The condition also caused quite severe liver cirrhosis which was so bad that at the time my team in Our Lady’s Hospital in Crumlin had sent all my files to the Kings College Hospital in London to be added to the liver transplant list. I had a chronic itch; my poor mother had to put mittens on me as a baby to stop myself from tearing my skin but even at that the mittens needed changing multiple times a night as they’d be covered in blood from my persistent itching. Luckily as I got older things settled a little with my liver cirrhosis and life began to get a little bit more ‘normal’ – although I was still 100% tube fed at night because of my liver issues. After multiple failed attempts to try to get me to eat my poor parents began to think maybe I never would. It wasn’t until I was eight years old when I eventually found some determination to start eating and although that journey was incredibly tough, I’ve never looked back.

Once the feeding tube was gone and after a number of good years, I almost presumed my ‘sick days’ were over and I was living life to the full. Unfortunately, things took a turn in the wrong direction when one morning, at 17 years old, I was at a routine dentist appointment at the Cork University Hospital (CUH) Dental Hospital. I was finished with the appointment and just had popped into the bathroom before leaving when very suddenly I had an extreme pain in my head and instantly blacked out – my mum caught me before I hit the floor and there were paramedics standing over me when I woke up. At first, I couldn’t understand the drama or why an ambulance had been called and thought surely it was just a little fainting episode. After a very short trip in the ambulance (one corner of the hospital to another), it wasn’t long before we were told I had had a brain haemorrhage. A scan showed I had two brain aneurysms (another symptom of my rare condition) and one of them had ruptured (on the grounds of the hospital!!)  Long story short after a number of surgeries with two of the most incredible neurovascular surgeons who, during one surgery, came up with a ground-breaking technique that entered into medical journals afterward – I made a full recovery.

I did my Leaving Cert the following year after missing a ton of my 5th year and got my preferred course – Food Marketing and Entrepreneurship – and I couldn’t have been happier! I loved college and college life, but things once again didn’t stay calm for too long and in my 3rd year of college I had to make the decision to drop out due to my extreme intense itching and complete and utter exhaustion.

After a second opinion with Prof Heaton at the Kings College hospital in the UK, the hepatology team at St. Vincent’s University Hospital were urged to immediately list me for a liver transplant. I was on the transplant list for only three months before getting the call. Everything in those early days post-transplant is a real blur. All I can really remember from ICU is the overwhelming frustration of not being able to scratch. The multiple tubes or 40 odd staples in my abdomen weren’t bothering me; it was just the itch that, as usual, had me tormented. My family took turns each coming in with a hairbrush to tear into my legs so that I could relax and get some rest. Less than a week after the transplant the itch had completely gone and life as I had known it forever got a trillion times easier. Of course, those first few weeks and months were difficult and came with a whole host of varying emotions but overall, I was blown away by how different my life was with finally no intense itch or extreme exhaustion. I have been extremely fortunate that in my nine years post-transplant I have never experienced any rejection or major infections, so life on the whole has been pretty great and I’ve never looked back.

Since my transplant in 2015 I have gotten married, set up my own business and even had a little boy just four years after the transplant. I don’t believe I would have seen much more of my twenties if it hadn’t been for the transplant so I will always be grateful to my donor and their family for giving me this second chance at life.