AIH - looking for parents who may like to start a support group.

[Nattie]

I find being a parent of a daughter with AIH liver Disease. I find I crave the support of someone who understands her condition.

I live on the Essex/Suffolk boarder but happily cross the boarders to find parents who's interested in a support group.

Thanks Natalie x

[Penguin8]

Hi Natalie

I too find AIH & PSC is not as comman as other Liver Diseases such as BA and find that support is limited apart from what I gain from CLDF.

My Daughter is 9 but was diagnosed at 7 and the past 18 months has been a uphill struggle indeed and I often found trying to find advice from other AIH parents difficult.

We live in Glasgow but I would be happy to be part of a support group for AIH although there are many Liver Families etc FB pages which can be of great support and full of information too, but I see a need for more specific groups for diagnosed conditions.

Keep me upto date.

[e-mail]

Elaine. X

[stampeeus]

Hi Natalie,

My daughter, Amelia, is 14 and was diagnosed with AIH when she was 10. Like Elaine said there doesn't seem to be many people talking about AIH unlike the other liver diseases. I live in Hertfordshire so depending on where you are, not too far away really. I think we have been lucky with Amelia as the only time off she has ever had (so far) has been when she was first diagnosed and on a high dose of steroids, when she was off school for 2 weeks and hospital appointments. We attend Kings College Hospital and come under the care of Dr Samyn. On facebook I have picked up details of a moving on day at Kings in September which we will be going to.

I have tried to keep things normal for my son, so I tend to go to all the hospital appointments on my own while my husband looks after him (he's 12 now so doesn't need much looking after).

Let me know whereabouts you are and if possible we could meet up if you wish.

Take care

Sandra

[Nattie in reply to stampeeus]

Hello

Thank you for your message. It gives me such support knowing these other parents to share our experiences or advice.

It doesn't matter where we live as happy to start with a support group for Parents with AIH.

I'm away on holiday at the moment.

Here's my email address and if you would like to email me if your interested in starting a group.

I have already received an email from Elaine.

[e-mail]

Thank you Natalie x

[MichelleCLDF Partner CLDF]

Please to keep us updated too. We also wanted to let you know that we have recently updated our information Autoimmune Liver Disease which can be down loaded from our website or if anyone needs paper copies please contact us.

Good luck and keep in touch.

[Nattie in reply to MichelleCLDF]

Thank you CLDF and shall down load the files.

[Joey2008]

Sure, I would love to be part of this group, my son as well has been diagnosed with Air, we live in nj, usa

[Nattie in reply to Joey2008]

Sound great and my email address above . I can set up a what's app group too. X

[Josh2512]

Hi

My son diagnosed with UC and ASC when he was 3; he's 10 now. He is on pentasa, pred and Urso. No major flare ups at all. I'm in London and see liver/ Gastro team at king college London hospital.

I always thing what the future holds for my son and can he live a normal life?

I am concerned if it will get worse during puberty age.

Happy to be part of group and share experiences and receive advice.

Regards

Josh

[Nattie in reply to Josh2512]

Hello Josh, thank you for your message. I hope we can all support each other at different stages of our children's developments.

My email posted if you'd like to email me Josh.

Being dyslexic I often make makes so please forgive any spelling errors.

Regards. Natalie

[Josh2512 in reply to Nattie]

Hi Nattie, et al

My email

[e-mail]

Best wishes

Josh

[AngelaMT]

Hi Natalie, my daughter has AIH and PSC, diagnosed at 8 yrs, now 16, almost 1 yr post transplant. Happy to get involved.

[tuc7]

hi nattie ,

my 14 year old daughter has just been diagnosed a week ago. I feel like i need a support group also. It's so scary and hard to just be strong when inside i feel terrified.