This weekend Sam and I will be running The 5K Liverpool Big Fun Run for a super amazing charity called PORT (Psuedo-Obstruction Research Trust). The charity is the only one of it's kind raising funds for medical research into Intestinal Failure. I want to say a really huge thank you to everyone who has so far sponsored us for this event and I especially want to thank those who have sponsored me on several occasions over the years when I've been raising money for my favourite charities.
Here is my final plug as I will be heading over to Sam's after work tomorrow so we can head to the race bright and early on Saturday morning.
Why raise money for PORT?
The chances are, that until now you have never heard of PORT. They are a small charity that single-handedly, tirelessly raise funds for research into intestinal failure, working with the (very few) lead doctors with a specialist interest in this underfunded field.
As most of you know by now, I was born with a genetic disease called Ehlers-Danlos syndrome. Secondary to and as a complication of this genetic alteration I have a severe functional bowel disorder which means that my bowel struggles to cope with the digestion of food.
In healthy people, the bowel moves food through in a process called 'peristalsis' - this means the bowel has co-ordinated contractions that pushes food through the digestive system whilst nutrients are absorbed into the bloodstream along the way. In people with functional bowel disorders such as psuedo-obstruction, enteric neuropathy and dysmotility, there is no peristalsis. The bowel may shut down completely or lack the co-ordination or muscle tone to push food through. This causes sufferers to become malnourished and dehydrated.
Symptoms of this include vomitting, severe pain, bowel blockages and swelling of the abdomen. This is constant and daily and many sufferers spend long periods of time in hospital whilst doctors attempt to control the devastating symptoms. Most people with these conditions rely on tubes into the stomach, bowel or bloodstream in order to receive the nutrition that they need to stay alive. All these forms of artificial nutrition carry risks of their own. Many sufferers undergo major surgeries and live with permanent stomas or drains throughout their abdomen, emptying the digestive system of the build up and waste that it is unable to push through.
Complications of the condition and their necessary treatments include sepsis and multiple organ failure.
My condition has deteriorated as I have got older. As a teenager I was so sick I spent all of my time bedbound or in hospital hooked up to hydration. I was unable to go to school for three years and through poor nutrition I lost the ability to walk.
Through the stress placed on my body as well as the effects the illness had on my mental health I began to lose my hair.
As I went through college I underwent immunosuppression treatment due to high levels of inflammation caused by irritation in my bowel. This was followed by the placement of my feeding tube. At first the feeding tube went through my nose and into my stomach and then a longer tube was placed through my nose which went all the way through to my bowel. This tube had to be replaced on an almost weekly basis through interventional x-ray as it caused blistering in my throat. The tube would have to be removed for a day or two, when I would recieve very little nutrition, whilst the blisters in my throat healed. Then another tube would be passed into my bowel again. After a week the whole process would start over again.
Eventually, I underwent surgery to fit a tube through my abdominal wall. I have been on this form of feeding for 4 years and I now await a bed on a specialist unit to begin parenteral feeding (feeding into the bloodstream) as my bowel becomes increasingly unable to cope with the formula feeds that are run through my tube.
I desperately want to see a day where quality of life is improved for patients who suffer and undergo so much disruption and pain in their lives on a daily basis. These conditions are so poorly understood and recognised that there is very little treatment out there to improve their lives.
We can't take painkillers because most painkillers further slow the bowel down meaning that it causes further pain. Most tablets are not absorbed, sit in the bowel for a long time before they are allowed a chance to work or vomitted or drained out before they have a chance to get inside us at all.
So few people have heard of the condition and realise the extent of what it causes and therefore, why would they pledge money into curing it?
I appreciate that not everyone has money to spare, but if you do, you are helping to fund research so that maybe one day none of us will have to suffer. If you share either this blog post, our virgin money giving page or even your own words, you are educating people so that one day they too may be inspired to pledge a little bit of money into research and one day children and adults will be free from their lines, tubes, backpacks and pain.
If you can sponsor or share our page please, please consider doing so.
www.virginmoneygiving.com/hamforport
THANK YOU!
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