PFIC any knowledge🤔

[Jyden]

Hi, I'm parents to a daughter who recently received the diagnose PFIC 3, She is 16 years and from Denmark. She is lucky to respons positiv with the medicine. But how is the forecast with this disease 😳

Hope to hear from others with PFIC 3

[Caitlin-CLDF Partner CLDF]

Hi Jyden , glad your daughter is responding well to the treatment.

We have some information on PFIC on the CLDF website (childliverdisease.org/pfic) which will hopefully help, although please be aware that the information provided is written for people who live in the UK and therefore some parts may not be relevant to Denmark.

Hope she continues to do well

[Jyden in reply to Caitlin-CLDF]

Hi Hannah.

Thanks for your response. We have downloaded your material on PFIC from the site👍

Hope therr are som one who know about PFIC

Have a nice weekend🎶😃

[Ktrotter1]

Hi, I just found this page. I hope your daughter is still doing well. Both of my daughters just got diagnosed with PFIC3 about 6 months ago. We do live in Florida, but I am originally from Denmark. So far both of my girls are responding well to the medication as well. Are your daughter still doing go on the medication?

[Jyden in reply to Ktrotter1]

Hi, I'm so glad that you found this page.

My daughter is doing fine at the moment, and is still responding well with the medicine. She has had a bad time with many pains and itching a couple of months ago. But right now she is having a good time at her boarding school😊 She is a very cool girl that have decided that her disease is just a small part of her.

I think the hardest part is the wondering. Her daily struggle and the thought of she will need a life-saving surgery is hard.

How old are your girls, and how did you became aware of this PFIC3

Maybe we can write in Danish 😊

Hope to hear from you again💚

Kind regards

Lotte

[Ktrotter1 in reply to Jyden]

Hi Lotte

I send you a private message

Karen