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I am really excited by this. I spoke to one of our new members Andy Dyche who was interested in setting up a charity for AFLP. He told me he spoke to the British Liver Trust about it who suggested a support group would be more appropriate. It reminded me that after our TV appearance, the BLT had said they would list this website on theirs. So, I checked afetr speaking to Andy and it wasn't listed. I contacted the BLT again and they apologized and added my website. The surprise was that they consider my website as being a support group, though there is nothing official about it. So, I have been invited to the 2nd Support Group Conference that will take place in the Midlands (Leicestershire), on 1st and 2nd September 2008. This will be the perfect occasion to meet people who can advise me on raising awareness for liver disorders in pregnancy, either from other support groups or professionals. It is going to be hard to leave my youngest one (guess it will be the first time), but I am genuily excited by the opportunity. And it might be that I get to meet some of you northeners (sorry, anything north of the Thames is "up north"!!!). |
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Friday, 18th January 2008 |
Congratulations to Jody and her family on the arrival of their new baby daughter, conceived after an AFLP pregnancy. Mira Elizabeth (short for miracle)
Arrived 1/18/08 1:11pm via scheduled c-section at 37 weeks
7lbs 9ozs 19 1/2in Mira is sister to James Robert born sleeping January 17th 2007
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Saturday, 23rd September 2007 |
It has been confirmed, Sasha and I are going to be on TV! We will be talking about AFLP to help raise awareness of Liver Disorders in Pregnancy. We will be on set with an expert in Gyne and Obs. Monday 15th October 2007, 11.15 am, on "This Morning" on ITV1. For our friends from abroad, you can watch the program live at www.itv.com. Click on watch now and ITV1 (under the small screen on your right hand-side) I will try to record it and put it on my website, but I am not sure how it works.... Wish me luck!! |
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Wednesday, 25th July 2007 |
Well done to Melissa who contributed to an article about AFLP in the Toronto Star: Liver Quick Facts
- The liver performs nearly 500 functions in the body, including the production of energy, the elimination of toxins from the blood, infection control and the storage and transportation of iron.
- Hepatitis B and C affect more than half a million Canadians and more than 500 million worldwide. That compares with 50 million who have contracted HIV globally.
- Symptoms of liver disease include jaundiced skin and eyes, dark urine, abdominal swelling and pain, incessant itchiness and nausea, loss of appetite and fatigue
Jul 24, 2007 02:03 PM
Joseph Hall
medical Reporter
It's been given the chopped liver treatment for far too long now.
The liver, one of the body's most important and vulnerable organs, has languished in relative medical obscurity as hearts, lungs, breasts, bones and a host of viral and genetic diseases have crowded it out for recognition and funding.
But almost one in 10 Canadians will suffer from ailments of the blood-cleansing, energy-producing organ during their lifetimes, according to the Canadian Liver Foundation.
And a new foundation campaign to promote liver health and awareness - through television beer commercial spoofs, among other things - is aiming to bring a growing number of liver problems into the medical and public spotlight.
"Liver disease is poorly understood and receives woefully inadequate public and financial support," said foundation president Gary Fagan.
"We hope that we can make this a top of mind issue for Canadians," he said.
Cancer and heart disease currently receive 10 to 15 times more money each year for research, Fagan estimated.
Yet nearly one in 10 Canadians will face a liver ailment in their lifetimes, he said - a number in keeping with some of the country's most common diseases.
Part of the reason for this, he said, is that liver disease has suffered from the widespread and unsympathetic notion that it is often self-inflicted, with alcohol-induced cirrhosis being the most well-known organ ailment.
But there are more than 100 types of liver disease, only one of which is caused by alcohol abuse, said Fagan.
"There is a stigma and often-times a joke about liver disease. Everybody (including many doctors) who talks about liver disease . . . starts talking about how much you drink," Fagan said.
Yet the most common and fastest growing form of liver ailment - affecting more than 1.4 million Canadians - is related to the growing obesity crisis, Fagan said.
Known as fatty liver disease, it is marked by a buildup of fat in the organ and can be caused by both poor nutrition and exercise habits and by drinking. It is often a precursor to cirrhosis.
But Fagan said the percentage of fatty liver disease caused by obesity has now surpassed the proportion due to alcohol abuse.
"Fatty liver due to obesity has become the number one (liver) health issue," he said.
And liver ailments can strike people of all ages, including infants, with few current available cures outside of transplantation.
Melissa Harris, of Napanee, was 35 weeks pregnant with her first child when she began to suffer from nausia, heartburn, fatigue and swelling back in November, 2006.
Assured, however, that these were commonplace symptoms of a third trimester, she made due with an antacid to take care of her stomach upheavals.
Within a week, she had lost her baby and slipped into a coma - after being diagnosed with a rare ailment known as acute fatty liver pregnancy. The disease, which resembles cirrhosis, affects about one if 15,000 pregnant women and can completely destroy the organ function.
"The doctors asked me did I do drugs or drink and a I said 'of course not'," the 31-year-old schoolteacher now says. "It's just not always related to alcohol."
Harris also said the campaign's goal of prompting doctors to think "liver" in the face of more obvious diagnoses is crucial.
"I would just like to say to people in the medical field . . . if there are these symptoms, do a liver function test," she said.
Harris, who came out of the comma after two weeks, was on the brink of having a liver transplant - with her compatible husband as the scheduled donor. Prior to that early 2007 surgery, however, she began to experience a regeneration of her own organ.
A major problem with liver diseases - one the campaign hopes to address - is that they rarely present themselves symptomatically until huge damage has already been done.
"The heart of the issue is that a lot of people who have liver disease have not been diagnosed with it," Fagan said."The liver is an amazing organ that doesn't always tell someone that they've got a problem."
Fagan said doctors must learn to investigate liver function in a routine way with their patients.
And early intervention can play a crucial role in reducing mortality, as the organ's capacity to regenerate itself is almost miraculous, Fagan said. |
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Big cheering for Melissa and her family, who have participated to the Stroll for Liver (Canadian Liver Foundation)!!! Her team has raised $2000 to help with the research in liver disorders especially in children and women. Melissa shared her AFLP experience with the researchers participation in the "Stroll" and also with newspaper and radio people. So well done Melissa (and family!). Family to baby Audrey, born asleep. |
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Today I had an e-mail from the head of a medical research team at Oxford University (UK). The research is about AFLP. I had contacted them hoping that we could have an insight on the research and here is what the e-mail said: Thank you for your email which I received via Ian Sargent. I have attached a brief summary for your website about the study of acute fatty liver which we have been undertaking. We are still in the process of completing the analysis of the results which will be posted on our website when they are published - I have included a reference to the website address.
Good luck with your website initiative. It is particularly valuable with rare conditions that groups such as yours exist where women can share their experiences.
Best wishes,
Dr Marian Knight
UKOSS Clinical Coordinator And here is what the document's contents (if you ant a copy of the original let me know and I will e-mail it to you): Acute fatty liver of pregnancy is a rare and potentially lethal condition of late pregnancy which may cause severe illness and even death of a mother and her unborn child. The condition may be one of several linked disorders related to preeclampsia (high blood pressure during pregnancy). Deaths of women during pregnancy are very infrequent in the UK, but acute fatty liver of pregnancy has been identified as one of the more common causes of the few deaths that do occur. Nevertheless, despite the severity of the condition, very little research into acute fatty liver has been carried out because the condition itself is very uncommon. Investigations of uncommon conditions such as this require large groups of researchers to work together to study enough women to be able to make useful conclusions about what happens to women and their babies who suffer from the disease. The UK Obstetric Surveillance System (UKOSS) includes participants from all hospital consultant maternity units in the UK. The aim of UKOSS is to study important rare conditions of pregnancy such as acute fatty liver through collecting anonymous information about the number of women who suffer from the disorder, how they are treated and what happens to them and their babies. This information is then used to help develop guidelines for doctors and midwives about treatment of affected women and to plan hospital services. The UKOSS study of acute fatty liver collected information between February 2005 and August 2006. The analysis of this information is currently being completed. Preliminary results suggest that over this time period one woman suffered from acute fatty liver in every 22,000 women giving birth, highlighting the rarity of the condition. For further information about UKOSS and study results when they are available please see the study website: http://www.npeu.ox.ac.uk/ukoss |
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We had been told that we could go to the Patient Advise Liaison Service and ask for an internal inquiry. So we put down all the questions and concerned we had regarding my post natal care. And we recieved a honest answer. We were told how, why and where it went wrong, how things could have been avoided and what steps the hospital had taken to avoid a repeat. |
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At last, this is the final draft of my website. Though I am still working on it I am quite happy of the results. Please leave me some feedback in the guestbook to tell me how I am doing!!! |
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