New member 🙋

[ARPKD_]

Hi! I just happened upon this site while trying to find an answer as to why I'm having such severe pain, I'm glad I found you guys! I'm not in any kind of support group for my health problems but I feel I can greatly benefit from one! And if anyone has any suggestions for a liver and/or kidney support group I would very much appreciate it! I do have a rather urgent question but I wanted to introduce myself first. My name is Kasey, I'm 29, and I have Autosomal Recessive Polycystic Kidney disease and went into the liver failure part of the disease 4 years ago. I don't know anyone else, personally that is, that has ARPKD (it is so rare) and I'd love to chat with anyone that does. I'd love to chat with anyone that has liver disease as well.

[jojokarak]

Hi kasey I have had liver disease but not through your condition but happy to help you if I can 😁 which part of the country are you because there are support groups available

[Hidden]

Hi Kasey,

Welcome to the forum.

We have answered your other post about you being in pain and advised that you seek out immediate medical help.

With regards to support groups, you may want to look at our on support services where you can search for support groups via a geographical map, here is the link;

britishlivertrust.org.uk/fi...

We hope you find the forum a supportive place to visit, but most importantly, please do seek out medical help as soon as possible.

Warm wishes,

Team BLT

[Porphyrogennetos]

Hello Kasey,

I have ADPKD with liver involvrment (biliary hamartomatosis), which is a rare condition alright. But yours is incomparably more infrequent. There is a PKD board on healthunlocked, which is not very active. And, obviously anything I have read there so far, deals with ADPKD.

I hope you are feeling better to-day, and your pain has lessened.

Best of lucks,

P.