caroli disease

[Pano]

Hello, my first posting in the hope I will find someone with information about Caroli disease. My daughter has this rare condition and it would really help to talk to someone about it

[AyrshireK]

Hello Pano, sorry I can't help with the particular condition your daughter has and as no one else has posted I just thought i'd say hello.

What age is your daughter? If she is a child or young adult you might find more support via the Children's Liver Disease Foundation at:- childliverdisease.org/about...

Caroli disease is obviously very rare as neither the British Liver Trust of CLDF has it listed as a condition on their sites. I also found this site that seems to have a focus on caroli's disease. patientslikeme.com/conditio...

I hope you find someone else to share your worries with and gain support.

Katie

[Hidden in reply to AyrshireK]

Hi Pano

Welcome to our forum.

We do have some information on Caroli's disease and Caroli's syndrome in our Benign Tumours and Cystic disease of the liver ( page 17 and 18) but it is fairly limited;

britishlivertrust.org.uk/wp...

I think we may have talked on the helpline yesterday but if you need to call again please do., and hopefully another forum member may be in touch with you if they have Caroli's to offer some support.

Best wishes

Trust1

[Pano in reply to Hidden]

Thank you it was so useful to talk with you yesterday, Thank you for your advice in everything I need to set up. I sent my email with all my various requests to the consultant today

[Hidden in reply to Pano]

I am so pleased you found our conversation helpful. I really enjoyed speaking to you and if I can be of any further help please do call!

Warm wishes

Trust1

[Mama41]

Hello. Unfortunately the British Liver Trust is worse than useless when it comes to information on rare liver conditions.

There is a small Facebook group on Caroli disease. They may be able to point you in the way of more resources.

Best of luck to you.

[Hidden in reply to Mama41]

Hi Mama41

We are small team at The Liver Trust but do try very hard to support people with all liver conditions.

If we have not got specific information regarding a very rare condition then we would always try to signpost to other organisations that would be best placed to help.

If I can assist you at all please call the nurse helpline. It is open Monday to Friday 10am to 14.45.

Warm wishes

Trust1

[Pano in reply to Mama41]

Thanks so much .. having a look now

[Wass71 in reply to Mama41]

Wow, the administrator is being diplomatic and polite, but I am shocked at the rude and unpleasant tone you have taken with your post Mama41!!!

I think that is extremely unfair, they are not a profit making organisation. We are not paying for the excellent service they provide. They are a charity, It must be very hard for a small team to keep an up to date, factually correct website, which is reliably used and trusted the world over. As well as supporting people over the phone, moderating this forum etc.

I think they can be forgiven for not having such specialist info on rare conditions. Most rare illnesses have dedicated websites, and as the administrator says they would direct people accordingly.

I feel I owe a great deal to the BLT and this forum, as such I had to give my thoughts on how stunned I am by the tone of this post. Everyone is entitled to an opinion, however we have no right to offend others when sharing that opinion.

[Mama41 in reply to Wass71]

As you said I'm entitled to my opinion..I have been asking the BLT to update the info they have on the liver condition I have.

I put them in touch with the foundation in the States who were more than happy to provide iinformation for patients in the UK.

The BLT have been contacted on numerous occasions but have still failed to update their website or add this condition to any of their literature..

When a newly diagnosed patient in the UK called the helpline they were in fact directed to the 2 sentences of information on the website and not told there was further help available to them.

I understand they are a small charity and need to prioritise their time(not too busy to be leaving themselves fake 5* reviews on Facebook though) which btw is made up mainly of paid employees but my dealings with them have been less than positive and I will speak as I find.

[1football in reply to Mama41]

What a very informative,helpful post Mama NOT 😡

[VeeWat]

You could try Patient.info groups.

[Pano in reply to VeeWat]

Thank you .. will do

[Hidden]

Hi Pano,

Sorry to hear about your daughter's rare illness and wishing you both the best.

Perhaps her doctor can put you in touch with a patient's group for this or there might be some information on other's with this in a local library or on the web.

Best wishes,

Mary

[Pano in reply to Hidden]

Thanks

[Smyally]

Hi Pano

Sorry to hear about your daughter. It is always hard knowing which way to turn when first diagnosed. I I hope you find the information that you need. I wish I could help but I don’t know much about Caroli disease. Personally always find the British Liver Trust support very good and normally excellent support on this group. You could try the Facebook group as well. Two sources of information are better one. Take care x