Fighting HEP C for our children

Ive set up this Blog to help brings Families together who have a child who is infected with Hep c. To let us all share our stories and offer each other the support that we so desperatley need especially in those first few months of hearing the bad news. Alot of families dont know what direstion to turn and alot of GP's dont know which direction to point them in. Im hoping we can change that and make more people HVC aware.

Friday, August 18, 2006

reply to gemma

My daughter will be having 48 weeks of treatment. her appointment is on the 15th of september, I feel so scared of whats going to happen and how she will react to it, the thought of having to inject her too is really scary, and dont get me started on the biopsy!!! Your son is so brave gemma going through it at 13. i had a rough ride on the treatment but thankfully it worked for me id do it ten times over to get that result. Im sorry it didnt work for you. Are you considering another round? Has your son had his first result yet? I wish him the best of luck. As for his school, some people are just so ignorant they really should be more understanding towards you both. xx

Thursday, May 04, 2006

My daughter is 5 months away from her next hospital appointment and I think alot about her treatment, how she will cope, how i will cope etc. I have just had my 12 month all clear tests back - great news but I find it hard to feel elated knowing she still has it. We are trying for another baby, do you think thats a wise move with her upcoming treatment?

Thursday, November 03, 2005

Wednesday, November 02, 2005

Welcome

Hi, my name is Kelly. I am a 26 years old and live in Wales UK. I am Mother to 2 year old Amy. I was diagnosed with Hepatitis C but still not really sure how long ive had it. At the time I knew of Hepatitis C, I knew Pamela Anderson had it but that was about all and of course when I became pregnant it was a real worry for me.
Hepatitis C is a blood-borne virus that predominantly infects the cells of the liver. This can cause inflammation of and sometimes significant damage to the liver and affect its ability to perform its many, varied and essential functions. Although it has always been regarded as a liver disease (hepatitis means inflammation of the liver), recent research has shown that hepatitis C affects a number of other areas of the body including the digestive system, the lymphatic system, the immune system and the brain.
Hepatitis C was discovered in the 1980s when it became apparent that there was a new virus (not hepatitis A or B) causing liver damage. It was known as non-A non-B hepatitis until it was properly identified in 1989. A screening process was developed in 1991 that made it possible to detect it in blood samples. It is thus a relatively newly identified disease and there are still many aspects of it that are little or poorly understood.
There are an estimated 200 million people worldwide infected with hepatitis C but the level of infection, known as prevalence, varies widely from country to country. In some countries, such as Egypt it is over 10%; in the US it is believed to be nearly 2% and in northern Europe around 1%. Transmission is by contact with infected blood.
Having hepatitis C does not rule out having children. Many women with hepatitis C experience a trouble-free pregnancy and delivery and deliver healthy, hepatitis C-negative babies. The risk of transmitting the virus from mother to child is approximately 5% more recently thought to be 10% where high viral load is present.
Mothers with very low viral loads are much less likely to transmit the virus to their infant. However, if the mother is also HIV positive, the risk increases significantly to up to 36%.
Three months after I gave birth to Amy she had a PCR (polymearaise chain reaction)test which is a blood test which tests for the presence of the HCV itself nd not just the antibodies which are maternally passed to the baby and can remain in the babys blood up till 2 years old without the baby actually being infected.
Two weeks later her test result came back and it was bad news. It was just given to me over the phone by some random nurse id gotten hold of, her words were " oh yes its positive" I asked if that was the antibody test or PCR and she said "I dont know speak to your GP". So after hours of tears we called the GP and he knew about as much about HCV as I did when first diagnosed.GPs dont seem to get regular updates on this infectious disease which is quite poor. They should be sent news letters regularly updating them on this subject. He didnt know who we would see about the babys care the hospital that done her test didnt arrange a follow up just left us to it. We felt very alone and very worried. I trawled the net for information on Children with Hep C and found there wasnt alot. With the help of our health visitor we finally got Amy an appointment with Professor Kelly at Birmingham childrens hospital where she filled us in on what to expect with Amy which was not much really.
Basically she has annual check ups now, her last was just last month. She remains PCR positive but her liver functions are OK.
At the moment treatment for young children is just ending a clinical trial with Scherring plough in Birmingham it will finish early next year. At the moment they only treat over 5's. Next year they will have the ribavirin syprup so they will be able to treat 3 year olds thats when Amy will have her treatment at 3 years old. Ribavirin is used in combination with an injection called peginterferon. ribavirin was originally made for a cure for flu, it didnt work well but seems to work great with peginterferon, noone knows why?
In the clinical trial 100% of children infected with geno type 2 and 3 have cleared the virus. Unfortunatley Amy is Geno 1a as I was so will have a longer treatment of 48 weeks and stands a very good but smaller than 100% chance of clearing.
Last May I began treatment for my own HCV by 12 weeks I was clear and remained so throughout my treatment and now 6 months on ive been given the all clear.
Ive set up this Blog to help brings families together who have a child who is infected with Hep c. To let us all share our stories and offer each other the support that we so desperatley need especially in those first few months of hearing the bad news. Alot of families dont know what direction to turn and alot of GP's in particular dont know which direction to point them in. Im hoping we can change that and make more people HVC aware.