Friday, June 11, 2010

British woman's liver disease makes her look pregnant

By Jenna Sloan The Sun



STARING into the TV camera, Kerrianne Phillips looks resigned to her fate.

A prison door bangs shut on her small room, but the pretty 22-year-old hasn't been jailed.

Kerrianne is in fact the star of a new telly advert which depicts those on the transplant list as living on death row.

Diagnosed with progressive liver disease as a child, Kerrianne's condition has made her body balloon and now she looks nine months pregnant.

In another life her face could have graced the covers of fashion magazines and billboards.

A top New York model scout spotted her while she was on holiday eight years ago.

Her dreams of a catwalk career were never possible.

But here she is, finally in front of a camera in an advert for The Kidney Wales Foundation.

The commercials hope to raise awareness of the lack of organ donors and to prompt debate on an opt-out system.

In this scheme, all Brits would be automatically classed as organ donors UNLESS they indicate otherwise.

Some experts expressed alarm at the statistics, adding that 100 people die every year waiting for a life-saving liver transplant.

Kerrianne, who lives near Aberystwyth, Dyfed, has a rare liver condition called Glycogen Storage Disease Type A.

Her liver cannot break down sugar, which causes her intense pain, periods of unconsciousness and frequent hospital admissions.

The organ has also ballooned and is still growing.

Here Kerrianne, who lives with her mum Clare, 43, a waitress, and siblings Hannah, 17 and Thomas, 12, writes a moving open letter to anyone thinking of joining the donor register and explains why a new liver would be the ultimate gift for her and her family.

Dear Reader
I'M writing to you sat in the spare bedroom at my mum's house. I can't tell you how nice it is to be home - especially after spending almost 18 months in hospital.

But what I really want is my own life back. Before my condition started to go seriously downhill, I rented my own flat and had it done up just how I wanted.

But I had to give it up after my doctors told me it was too dangerous for me to live on my own.

My liver can't break down sugar - it stores it instead. That sends my blood sugar levels haywire, meaning I can pass out at any moment. It also causes my liver to grow and swell.

At the moment it weighs two stone (28 pounds) and I look like I'm nine months pregnant. It presses down on my pelvis and wraps itself around my kidneys. It crushes my diaphragm so it hurts even to breathe or lie down.

A transplant would transform my life in a million ways, but just one would be that I'd be able to get back to being a normal size again.

On the rare occasions I've been allowed out of hospital over the past year and a half, I've been on shopping sprees to Matalan and New Look.

But I hate the fact I can't wear any of the new stuff I've bought because my liver just keeps growing.

I live in a small town in the middle of rural Wales and people make assumptions about me all the time.

Old ladies call me names thinking I'm an expectant teen mum.

I'd love to go on a girly holiday or travel anywhere. But I'm just too ill.

I've only left the country once, to go to New York with my grandad to visit family, eight years ago. While there, I was spotted by a model scout in the street who said I could have a future in modelling but look at me now. There's no chance of that.


Goodbye

This isn't the only letter I've had to write.

Doctors have advised me to write to my friends and family, a goodbye note for after I've passed away. It's like writing a suicide note when you don't want to die.

How do you even start? I've done one for my best mate but I can't face the thought of writing to my mum, my sister or my brother.

Thomas is only 12, and I've agonised over what to write to him. It has to be as relevant to him now as it will be in 50 years. If I did die it would hit him really hard. It's too much to get my head around. For most of my life doctors have been giving me weeks to live but I try not to think about it and take one day at a time. I'm used to proving them wrong. My mum brought me up not to whinge or moan and I've dealt with my illness myself since I was a child.

But I would love a job. If I got a new liver I hope I'd be able to work. I passed seven GCSEs but I've been in hospital so much since I was 17 I haven't been able to go to college.

I dream of being a nurse or working with children, but I don't have any experience and I'm knackered walking just 50 yards.

I know for me to get my life back, someone else would have to lose theirs. It's horrible to think of.

But I have to emotionally detach myself to deal with it. And whatever I'm feeling would never come within a million miles of what the donor's family would be going through.

But I'd want them to know that their gift has given me my life back. I don't know if I could say thank you enough.

I'd just like YOU to think about adding your name to the organ donor register, to think about helping someone like me should the worst happen to you.

A new liver would be best gift I could ever wish for. With love and thanks,
Kerrianne x



“You Have the Power to Save Lives – Register to be an organ  and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see http://en.wikipedia.org/wiki/Allograft">allotransplantation). One tissue donor can help 75 to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves



Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You 

1 comment:

Howard said...

My name is Tammy and I live in Orlando Florida. I'm 53 and I look just like you because of my liver also. I have NASH Hep and I'm told that my liver will grow and grow until it either pops or rips and bleed out. I've ask for a transplant and am told I'm not sick enough YET!! I now am diabetic (take both pill and needle for it) I feel sick all the time, can't work, my liver problems have changed my way of life. I hope things work out for you and you can get your life back. I'll pray for you that Jesus will help you cope. Take care Tammy