How easy is it to find Liver Disease information?
Living with a long-term illness is not fun but, when you have such a rare illness as Primary Sclerosing Cholangitis which I suffered from for over 10 years, it is interesting to know that no matter how hard things get, at the end of the day we are a number among many other liver diseases.
If we go back in time before the age of the internet, we would have to turn to an encyclopedia for information, articles in newspapers and, often incorrect information passed on by word of mouth for most liver disease information.
However, when you type liver disease into Google it is actually shocking how many liver diseases there are and in truth very little liver disease information and awareness.
While there is some information to be found on the internet, it is often in a language hard to understand and at the same time, with so much conflicting information on the World Wide Web, it is hard to know what to believe.
Right now there are over 30 different liver diseases and who can honestly name more than 5 of them.
Rightly or wrongly, before I was diagnosed with Primary Sclerosing Cholangitis I thought liver disease consisted of only alcohol-related illnesses and I would be fine as long as I didn’t drink too much alcohol. Is this naivety, lack of general education or the notion that, if we are not affected by something why do we need to know.
As mentioned on the website, British Liver Trust, the cost to the NHS of alcohol misuse has been estimated at £2.7 billion each year. This is, of course, a huge amount of money and is it due to this, sufferers with non-alcohol related liver disease feel left out in the cold in terms of public awareness, support and being able to find information about their specific liver disease or liver disease information in general? It is certainly something that I have felt on a few occasions.
What can we do to halt the liver disease before it actually takes hold and, is this actually possible?
Unfortunately, as I found while suffering from an autoimmune liver disease, there is not really a lot you can do to halt the illness or even change its path. Maybe we have the power to slow it down but, until the day comes that a cure or medication is available to keep the illness under control, having to go through a liver transplant is the only real help that we have right now.
Personally, I think there was nothing I did not try to help keep the illness at bay including herbal pills, herbal teas, diets and exercise but in the end I ended up with a liver transplant. What I think this may have helped with, is giving me a few extra years with my own liver.
When I think of my poor old liver, the doctors and consultants told me right up until I had my transplant that I needed to try and hold on and keep my own liver for as long as I can. Being so sick and close to the edge, was I really going to take this seriously? You know the story… You are so sick and all you can think about is running to the hospital for the transplant when you get that call but, it was not until I had my transplant did I understand why they were saying this.
Liver transplants are an amazing thing and we are so grateful for what our donors have done. However, having a transplant is not all plain sailing.
While some illnesses can be helped or halted by changing lifestyle habits and some cannot. Ultimately the way to a better future for liver disease sufferers is through a combination of education and making liver disease information, in general, more easily accessible. More importantly, I believe there has to be more and continued research into how illnesses actually come about. It is about stopping illnesses before they start and changing their path to help patients before it is too late where there are alternatives.
Thanks for reading.
Peace, Love and Light x