My First Blog Post

Being Diagnosed With Wilson’s Disease – “Am I Going To Die?”

For this first post I had to ask my Mum what she could remember as we have to go all the way back to the years 2000 – 2001 and I don’t really remember too much about what was going on at the time. I also have to say this is just my personal experience of Wilson’s Disease, from what I have seen everyone’s experience of having/dealing with the Disease is very different.

Before the year 2000 I was a very fit, healthy young lad. I had a great record of attendance for school, not that I always enjoyed it and I was a very keen footballer and athlete. I played for my schooled team and a Sunday League team, I ran at an athletics club and enjoyed playing most sports.

When I asked my Mum what she could remember she said it started in the summer holidays of 2000. I was feeling tired all the time and was sleeping a lot plus was moody which was slightly out of character for me. Mum didn’t know if it was me just being a typical teenager (I was the first child she had so it was all new to her), I was slightly anemic as well so she took me to the doctors for blood tests. The blood tests came back with a slight liver abnormality but the doctors said it was nothing to be concerned about, so it was business as usual. I kept on going to school and playing football but all the time I was becoming more and more tired and loosing my fitness. I went from being the fastest runner in my school/football team to struggling with the 100m. I remember falling asleep on the bus on the way home from school and when I got home I would have dinner and go straight to bed.

On Christmas Day 2000 we had the usual Prawn Cocktail starter which made me violently sick (most of you will know Prawns and shellfish in general are very high in copper). Me being the person I am after being sick I went straight back to the dinner table to carry on eating the rest of my Dinner, not much stops me from eating. On NYE I went to a friends house as his parents were having a house party but I came home early because I said I wasn’t feeling very well.

A few days latter I was taken to hospital due to having severe stomach pains and a swollen stomach just like a pregnant lady. We later found out the swollen belly was due to water retention, while at the hospital they thought I had appendicitis but after doing test they ruled that out. I remember being in agony and screaming in pain and my parents refused to take me home until the doctors had figured out what was wrong with me. After 3 weeks in Lister Hospital, Stevenage, UK they had their suspicions it may be Wilson’s Disease. From there I was transferred to Kings Collage Hospital in London where they had specialist Doctors.

After lots more tests it was confirmed I had Wilson’s Disease, one of the main tests being the eye test where they could see the copper rings in my eyes. The medical term being Kayser- Fleischer Rings (KF Rings).

By this time I was very very ill but at the same time still very positive so my parents say.

Mum – “You asked the doctors if you was going to die and they said they were going to do their best not to let that happen, for a parent to hear their 15yr old son ask that question was devastating but you took it all in your stride…..”

Below are some facts/information about Wilson’s Disease and in the next Blog post I will talk about what happened after my diagnosis, I think there is an option for you to leave your email bellow and that will then inform you of any new posts that are put up. If you have any questions please contact me on Facebook – Danny Hiles or on Instagram @lost_in_life2017 and I will do my best to answer plus if people keep asking the same questions it will give me an idea of what to write for future blog post or I may also start a Youtube channel to answer questions that way as well.

What is Wilson’s Disease?

Wilson’s disease (WD) is a rare inherited disorder of copper metabolism in which excessive amounts of copper accumulate in the body. The buildup of copper leads to damage in the liver, brain, and eyes. Although copper accumulation begins at birth, symptoms of the disorder only appear later in life. The most characteristic sign of WD is the Kayser-Fleisher ring – a rusty brown ring around the cornea of the eye that can best be viewed using an ophthalmologist’s slit lamp. The primary consequence for most individuals with WD is liver disease, appearing in late childhood or early adolescence as acute hepatitis, liver failure, or progressive chronic liver disease in the form of chronic active hepatitis or cirrhosis of the liver. In others, the first symptoms are neurological, occur later in adulthood, and commonly include slurred speech (dysarthria), difficulty swallowing (dysphagia), and drooling. Other symptoms may include tremor of the head, arms, or legs; impaired muscle tone, and sustained muscle contractions that produce abnormal postures, twisting, and repetitive movements (dystonia); and slowness of movements (bradykinesia). Individuals may also experience clumsiness (ataxia) and loss of fine motor skills. One-third of individuals with WD will also experience psychiatric symptoms such as an abrupt personality change, bizarre and inappropriate behavior, depression accompanied by suicidal thoughts, neurosis, or psychosis. WD is diagnosed with tests that measure the amount of copper in the blood, urine, and liver.