It was so foolish of me to announce that I was going to blog more. The trouble is really that if I am actually doing interesting things I don’t have time to write them down. Lots of things I want to go into in detail, but none of them yet ready. In the meantime, a brief summary.
The CLDF Conference was fantastic; meeting up with a number of friends, and hearing some very interesting information. I have a first draft of my notes from the Biliary Atresia talk typed up, and I hope to have a finished version published here within a couple of weeks.
There was also some more information about Sulphasalazine and other possible treatments for liver damage; again, watch this space for more details.
The CLDF e-talk forum was also launched, and is already proving to be a useful resource for families in the UK.
At the conference we received Billy Rubin, the Liver Families Travelling Bear. I am ashamed to say he has been sleeping in Hannah’s bed ever since, but I have a couple of exciting trips planned for him before he leaves us in a week’s time.
That brings me on to the next exciting event, the first UK Liver Families Hugs and Hope Day at Kew Gardens next Thursday. I’m very much looking forward to meeting up with Janey, Nish and anyone else who can make it. I am also a first time visitor to Kew (a bit scared of London!) so that is an added interest.
I’m also keeping the girls busy on Wednesday, when we are meeting up with some friends from school at one of the other mum’s houses. With needing to take Billy Rubin sightseeing as well, it seems like the half term week will be full.
If you read Hannah’s blog, you will know that she has portal hypertension; not too severe, but enough to up my worry level a couple of notches. Today marks two years since she was discharged from the hospital, and I still find it hard to believe she hasn’t been admitted again since.
Caitlin is enjoying school, but very tired, and I think the half term week is coming just at the right time. Tomorrow afternoon her class are putting on a ‘Here I Am’ assembly. She has to say “I can sing a song for you”. Feeling nervous already.
I am very busy with a new project at the moment, something I am really excited about. It is in very early stages right now, but expect more news on that soon!
My Girls
Thursday, October 19, 2006
Wednesday, October 04, 2006
In anticipation of Saturday
Firstly, apologies to Elly for any insinuation that she is more boring than CBeebies. Perish the thought!
On my mind tonight is the upcoming Children’s Liver Disease Foundation Annual Conference this Saturday, which I am greatly looking forward to. Last year was our first visit (the year before we were just becoming aware that we were actually affected by childhood liver disease) and I found it to be an excellent event. My only regret was that I didn’t take any notes, and couldn’t remember a lot of it afterwards.
It is hard to know whether I am more excited about the conference itself or the chance to meet up with my friends. I can’t wait to get together again with Elly, Danielle, Jane and Nish, and to meet Liz and Alex for the first time. We are also planning a group photo with the Liver Families travelling bear Billy Rubin, whom Liz will be bringing to the conference and handing over to us! I am very excited about Billy Rubin’s visit, and plan to take him on a grand tour of Coventry!
The agenda for the conference looks excellent this year, as does the panel of experts. I hope to be able to personally thank Prof Millar for the clearly excellent job he did with Hannah’s Kasai….I haven’t seen him since she was discharged. I had this hope last year, but it was hard to be disappointed when the reason for his non-attendance was that he was carrying out a transplant. I plan to attend the session on ‘Biliary Atresia – Past, Present, and Future’, which should prove extremely interesting.
On my mind tonight is the upcoming Children’s Liver Disease Foundation Annual Conference this Saturday, which I am greatly looking forward to. Last year was our first visit (the year before we were just becoming aware that we were actually affected by childhood liver disease) and I found it to be an excellent event. My only regret was that I didn’t take any notes, and couldn’t remember a lot of it afterwards.
It is hard to know whether I am more excited about the conference itself or the chance to meet up with my friends. I can’t wait to get together again with Elly, Danielle, Jane and Nish, and to meet Liz and Alex for the first time. We are also planning a group photo with the Liver Families travelling bear Billy Rubin, whom Liz will be bringing to the conference and handing over to us! I am very excited about Billy Rubin’s visit, and plan to take him on a grand tour of Coventry!
The agenda for the conference looks excellent this year, as does the panel of experts. I hope to be able to personally thank Prof Millar for the clearly excellent job he did with Hannah’s Kasai….I haven’t seen him since she was discharged. I had this hope last year, but it was hard to be disappointed when the reason for his non-attendance was that he was carrying out a transplant. I plan to attend the session on ‘Biliary Atresia – Past, Present, and Future’, which should prove extremely interesting.
Monday, October 02, 2006
At last! A visit with Elly!
I started a post about CBeebies (I see you are on the edge of your seat – told you I planned to get more boring) but after being interrupted halfway through, finishing it seems like a TASK. My blog is not supposed to be a TASK. So something else for now, so at least I can post something.
I finally got to meet up with Elly and her boys today, after countless attempts which have had to be aborted at the last minute. Having seemingly overcome Arthur’s inexplicable ability to develop a skyrocketing temperature the night before any planned meeting (more on that later), Hannah and I set off for Oxford this morning.
Having stopped to top up with petrol, I thought I would text Elly to let her know we were on the way. I couldn’t find my phone. I drove home to get my phone. I couldn’t find my phone. I checked my bag again. I couldn’t find my phone. I went back inside. I couldn’t find my phone. I rang it. The bloody thing was in my bag. Why wasn’t it there before?
Things went smoothly from then on, and we sailed down the M40, although I had to keep up a constant commentary to keep Hannah amused….she is excellent at whining already. I was all prepared to come off at Junction 8. It had looked very close to J8A on the map, and I was surprised to keep driving onwards with no sign of J8. Finally…the sign appears…J6! How have I missed out 7 and 8? I thought I was concentrating. It was only later I noticed that junctions 7 and 8 only have access from the northbound carriageway..... Leave at J6, back up to J8, and at last I am on the home stretch to Oxford. Or at least I would have been, if there hadn’t been major roadworks on the A40, followed by evil traffic in Oxford…completely understand why Elly doesn’t have a car. Finally, we arrived, and I ably demonstrated my lack of parking skills to Elly and the boys.
Our visit was lovely, but far too short, as shortly after 2 pm I had to race back (only a slight exaggeration) to collect Caitlin from school, fortunately without any of the travel problems of the outward journey. Better planning on my part is required next time. The highlights were: cuddling Sylvan, who is just edible; a yummy lunch (although not in the opinion of Arthur – “No!” and Hannah “It’s yucky” – don’t you just love cooking for children?); seeing Arthur and Hannah feeding the chickens; meeting Elly’s delightful mum Kate; and at least touching on some of the topics that Elly and I have been wanting to chat about.
Of course Arthur eventually ran true to form, and just as we were about to go, yep, 38.6C.
I finally got to meet up with Elly and her boys today, after countless attempts which have had to be aborted at the last minute. Having seemingly overcome Arthur’s inexplicable ability to develop a skyrocketing temperature the night before any planned meeting (more on that later), Hannah and I set off for Oxford this morning.
Having stopped to top up with petrol, I thought I would text Elly to let her know we were on the way. I couldn’t find my phone. I drove home to get my phone. I couldn’t find my phone. I checked my bag again. I couldn’t find my phone. I went back inside. I couldn’t find my phone. I rang it. The bloody thing was in my bag. Why wasn’t it there before?
Things went smoothly from then on, and we sailed down the M40, although I had to keep up a constant commentary to keep Hannah amused….she is excellent at whining already. I was all prepared to come off at Junction 8. It had looked very close to J8A on the map, and I was surprised to keep driving onwards with no sign of J8. Finally…the sign appears…J6! How have I missed out 7 and 8? I thought I was concentrating. It was only later I noticed that junctions 7 and 8 only have access from the northbound carriageway..... Leave at J6, back up to J8, and at last I am on the home stretch to Oxford. Or at least I would have been, if there hadn’t been major roadworks on the A40, followed by evil traffic in Oxford…completely understand why Elly doesn’t have a car. Finally, we arrived, and I ably demonstrated my lack of parking skills to Elly and the boys.
Our visit was lovely, but far too short, as shortly after 2 pm I had to race back (only a slight exaggeration) to collect Caitlin from school, fortunately without any of the travel problems of the outward journey. Better planning on my part is required next time. The highlights were: cuddling Sylvan, who is just edible; a yummy lunch (although not in the opinion of Arthur – “No!” and Hannah “It’s yucky” – don’t you just love cooking for children?); seeing Arthur and Hannah feeding the chickens; meeting Elly’s delightful mum Kate; and at least touching on some of the topics that Elly and I have been wanting to chat about.
Of course Arthur eventually ran true to form, and just as we were about to go, yep, 38.6C.
Friday, September 29, 2006
Coming soon - higher output, even lower quality
My blog is supposed to be ‘A Place to get my thoughts together’. Sometimes I forget this and remember that people actually read it, and that most of my thoughts are far to boring for people to read about. Maybe I would be better off with a private diary; but I wouldn’t bother to write properly if I didn’t think people might read it.
What the previous passage of gibberish is really trying to say is that I am going to make more posts about even less interesting stuff, to try and make space in my brain for any interesting stuff that might just come my way.
What the previous passage of gibberish is really trying to say is that I am going to make more posts about even less interesting stuff, to try and make space in my brain for any interesting stuff that might just come my way.
Wednesday, September 27, 2006
Sulphasalazine - a new word for hope!
The Sunday Times September 24, 2006
Drug may heal livers of chronic alcoholics
Sarah-Kate Templeton, Health Correspondent
BRITISH scientists have discovered a drug that could cure liver disease, even in alcoholics who continue drinking.
The medicine, found by a team of doctors and scientists at Newcastle University, could become a potential alternative to liver transplants.
Until now cirrhosis of the liver, caused by alcohol, obesity or the hepatitis C virus, was considered incurable in all but the rarest of cases. The only option for patients in the final stages of liver disease was to wait for a liver transplant. However, because of organ shortages many die while on the waiting list.
Clinical trials of the drug Sulphasalazine are expected to begin in Britain next year. If these prove successful, the drug could be used to treat heavy drinkers, whose plight was recently illustrated by George Best, the former Manchester United footballer who died from liver disease last year.
Sulphasalazine, which already has a licence to treat arthritis and inflammatory bowel disease, acts by preventing scarring from developing on the liver.
Tests carried out in the laboratory and on animals have shown that the medication can even reverse damage already inflicted on the liver.
The drug will initially be given to heavy drinkers who have given up alcohol, but too late for their liver to recover naturally. If this proves successful, the medicine will also be prescribed to alcoholics who continue to drink but show a determination to fight their addiction by reducing their intake.
Professor Christopher Day, who heads Britain’s biggest team of liver specialists at Newcastle University, said: “If you stop a drinker with cirrhosis of the liver from drinking, the cirrhosis will still be there. Even though we remove the cause of the liver scarring, by this stage that is not enough.
“The prospect is that you may be able to continue drinking. If the drug is not too expensive, I may say, of course we have to give these patients advice about drinking, but who are we to say, ‘Just because you are still drinking, we are not going to give you this drug’? I would be of the view that it should be tried in patients who are making an effort.
“I would not give it to someone who continues to drink heavily every day, but if someone had cut down to three pints a night and was really trying, why not give him this drug that might help his liver recover?”
Sulphasalazine may also relieve the ethical dilemmas of distributing scarce donated livers to the most needy and deserving. The decision to give Best a liver transplant was controversial because the late footballer continued drinking. Critics argued that the organ should have been given to someone whose illness was not self-inflicted.
If the drug is not prohibitively expensive, it could be given to all liver disease patients, regardless of whether the damage had been caused by a congenital disorder or years of alcohol abuse.
“This drug is not a finite resource, you are not stealing it from someone else — which is always a worry in public opinion. People are dying on the transplant list,” Day added.
After years of heavy drinking or obesity, so many scars appear on the liver that it can no longer carry out its normal tasks such as storing essential proteins and vitamins while cleaning up toxic substances.
The new use for the drug followed the discovery by Professor Derek Mann, a member of the team at Newcastle University, who identified the cells and proteins that may move the liver disease into reverse.
Mann found that when the liver is injured by a substance such as alcohol, proteins called nuclear factor kappa B encourage particular cells to multiply, which scars the organ. By switching off the nuclear factor kappa B protein, the scarring cells die and stop damaging the liver.
There are 45,000 deaths every year in Europe from cirrhosis of the liver but the number is decreasing.
In Britain, by contrast, where more than 4,000 die every year, the number of deaths from cirrhosis is increasing amid growing concern about the country’s so-called binge-drinking culture.
Doctors report that increasing numbers of young people, including women, are succumbing to liver disease caused by heavy drinking and poor diet.
Between 5% and 10% of people in the UK are unaware of having liver disease, which can be diagnosed by simple blood tests. Help is often sought when the symptoms become severe, which is too late for treatment.
Reseach spend per life lost for liver disease is amongst the lowest for all conditions — only respiratory medicine ranks lower.
Copyright 2006 Times Newspapers Ltd.
This service is provided on Times Newspapers' standard Terms and Conditions . Please read our Privacy Policy . To inquire about a licence to reproduce material from The Times, visit the Syndication website .
Drug may heal livers of chronic alcoholics
Sarah-Kate Templeton, Health Correspondent
BRITISH scientists have discovered a drug that could cure liver disease, even in alcoholics who continue drinking.
The medicine, found by a team of doctors and scientists at Newcastle University, could become a potential alternative to liver transplants.
Until now cirrhosis of the liver, caused by alcohol, obesity or the hepatitis C virus, was considered incurable in all but the rarest of cases. The only option for patients in the final stages of liver disease was to wait for a liver transplant. However, because of organ shortages many die while on the waiting list.
Clinical trials of the drug Sulphasalazine are expected to begin in Britain next year. If these prove successful, the drug could be used to treat heavy drinkers, whose plight was recently illustrated by George Best, the former Manchester United footballer who died from liver disease last year.
Sulphasalazine, which already has a licence to treat arthritis and inflammatory bowel disease, acts by preventing scarring from developing on the liver.
Tests carried out in the laboratory and on animals have shown that the medication can even reverse damage already inflicted on the liver.
The drug will initially be given to heavy drinkers who have given up alcohol, but too late for their liver to recover naturally. If this proves successful, the medicine will also be prescribed to alcoholics who continue to drink but show a determination to fight their addiction by reducing their intake.
Professor Christopher Day, who heads Britain’s biggest team of liver specialists at Newcastle University, said: “If you stop a drinker with cirrhosis of the liver from drinking, the cirrhosis will still be there. Even though we remove the cause of the liver scarring, by this stage that is not enough.
“The prospect is that you may be able to continue drinking. If the drug is not too expensive, I may say, of course we have to give these patients advice about drinking, but who are we to say, ‘Just because you are still drinking, we are not going to give you this drug’? I would be of the view that it should be tried in patients who are making an effort.
“I would not give it to someone who continues to drink heavily every day, but if someone had cut down to three pints a night and was really trying, why not give him this drug that might help his liver recover?”
Sulphasalazine may also relieve the ethical dilemmas of distributing scarce donated livers to the most needy and deserving. The decision to give Best a liver transplant was controversial because the late footballer continued drinking. Critics argued that the organ should have been given to someone whose illness was not self-inflicted.
If the drug is not prohibitively expensive, it could be given to all liver disease patients, regardless of whether the damage had been caused by a congenital disorder or years of alcohol abuse.
“This drug is not a finite resource, you are not stealing it from someone else — which is always a worry in public opinion. People are dying on the transplant list,” Day added.
After years of heavy drinking or obesity, so many scars appear on the liver that it can no longer carry out its normal tasks such as storing essential proteins and vitamins while cleaning up toxic substances.
The new use for the drug followed the discovery by Professor Derek Mann, a member of the team at Newcastle University, who identified the cells and proteins that may move the liver disease into reverse.
Mann found that when the liver is injured by a substance such as alcohol, proteins called nuclear factor kappa B encourage particular cells to multiply, which scars the organ. By switching off the nuclear factor kappa B protein, the scarring cells die and stop damaging the liver.
There are 45,000 deaths every year in Europe from cirrhosis of the liver but the number is decreasing.
In Britain, by contrast, where more than 4,000 die every year, the number of deaths from cirrhosis is increasing amid growing concern about the country’s so-called binge-drinking culture.
Doctors report that increasing numbers of young people, including women, are succumbing to liver disease caused by heavy drinking and poor diet.
Between 5% and 10% of people in the UK are unaware of having liver disease, which can be diagnosed by simple blood tests. Help is often sought when the symptoms become severe, which is too late for treatment.
Reseach spend per life lost for liver disease is amongst the lowest for all conditions — only respiratory medicine ranks lower.
Copyright 2006 Times Newspapers Ltd.
This service is provided on Times Newspapers' standard Terms and Conditions . Please read our Privacy Policy . To inquire about a licence to reproduce material from The Times, visit the Syndication website .
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