Thursday, April 03, 2014

Gilbert and Me

I don’t really know, or remember if I have discussed my Gilbert’s Syndrome. Perhaps I did but it was probably quite a long time ago since Gilbert and me have had a pretty easy relationship over the last decade or so.

Wikipedia definition: Gilbert's syndrome (/ʒlˈbɛər/ zheel-BAIR), often shortened to GS, also called Gilbert–Meulengracht syndrome, is a genetic liver disorder and the most common hereditary cause of increased bilirubin and is found in up to 5% of the population (though some gastroenterologists maintain that it is closer to 10% in Caucasian people). A major characteristic is jaundice, caused by elevated levels of unconjugated bilirubin in the bloodstream (hyperbilirubinemia).

The cause of this hyperbilirubinemia is the reduced activity of the enzyme glucuronyltransferase, which conjugates bilirubin and a few other lipophilic molecules. Conjugation renders the bilirubin water-soluble, after which it is excreted in bile into the duodenum.

When you are diagnosed by a doctor of western medicine you will be told that it is a harmless syndrome that means you may have to be a bit careful after a night on the town, because you will wake up a little yellow, not to take too many painkillers and otherwise everything will be fine. If however you look online you will find websites dedicated to the disease, one of which is and another is an american website, both are very good and have plenty of information about the possible health affects of having GS. I suppose that Western medicine is right in that GS isn’t lethal, as far as I know.

However living with GS isn’t always as easy as Western medicine might have you believe. As with most chronic health conditions stress, and an unhealthy lifestyle will make you feel worse. As mentioned above GS is a genetic condition that one is born with, most people don’t know they have it until during a routine blood test the doctor finds it. Quite a few people will have it, without ever knowing it. Those of us diagnosed with it realise that a lot of our unexplained illnesses are linked to it. To explain what I mean I will tell you a little about how I was diagnosed.

I was always a slightly sickly kid, though that never stopped me from doing what I wanted to do. Then as I hit my teens I suffered from chronic ill-health, minor stuff like sore throats, headaches and general fatigue. I started high school and that’s when my health started encroaching on my life, I got to be the school admin. joke. It would go something like this, I would go to school on Monday morning, and then about 12 noon my energy would start dropping off and the school secretary would have to call my mum to come fetch me. Then I would spend the rest of the day in bed, get up the next morning and go to school, usually I would manage Tuesday and Wednesday and then Thursday would hit and once again around noon I’d be at the office having them call my mum to fetch me. So after a year of this my parents decided that enough was enough, my mum took me out of high school and I was home tutored to the end of my scholarly career. My mum and dad assumed that I had CFS, it was the early nineties and ME was well chronicled, I had all the symptoms. So about two years passed and we moved to the other side of Britain, I saw a new doctor who was interested in finding out if I had what my parents had already assumed, and so came the barrage of blood tests. Then the subsequent diagnosis of ME and GS, but since my doctor didn’t believe it was causing any symptoms she assumed that those two diagnosis were separate, not that the GS was the cause of my ME symptoms. It wasn’t until later when I met a person who suffered from another liver condition with constant back pains that I realised that GS was giving me ME symptoms.

At that point I was living in sunny Spain and the lifestyle and sunshine were helping me feel much better. Low stress, lots of relaxation, good food, nice wine and lots of sunshine. When I left Spain I had my GS under control, I was relatively healthy, I had what might be described as normal energy levels, I moved from Spain about 8 years ago. I felt cured, I stopped making sure I was eating as well as I could, I stopped looking out for my stress levels I went along like everyone else does. I ignored my GS and it has back fired on me. 8 years later and one year of high stress and bam! I’m back where I started all those years ago. Unable to manage more than a half a day of ANYTHING at all, and exhausted for days afterwards.

So you see GS IS a big deal, it can and does affect your health and you shouldn’t let anyone convince you it doesn’t!.