HELP support a Father n Husband coping w Rare Liver disease.

Hi my name is Joe, I have recently found out in the last 6 months that I have a rare genetic liver disease called PFIC (Progressive familial intrahepatic cholestasis) , This usually presents in new borns but my genetic mutation has shown now in adulthood known as PFIC 3,

This recent news has brought profound emotional, physical strain to the family, testing us in unexpected ways. The uncertainty surrounding treatments, new medicine and long-term care are all questions we have leaving my loved ones feeling overwhelmed and helpless at times. The day-to-day challenges I have are managing symptoms, navigating hospital visits that demand constant attention, often disrupting normal routines ,

At the same time, the financial strain from missed future work adds to my pressure as father/husband to support the family, making an already difficult situation even more exhausting.

PFIC is often associated with chronic liver disease, cirrhosis, and end-stage liver disease which are the main reasons I'm seeking further support with help from you all as when the time comes both before and after my transplant I will be unable to work for about 3-6 months maybe longer, I'm a Goods in warehouse manager for a online store so my work days are currently very physical,

Despite these hardships, we as a family have found the strength in unity, supporting one another with patience, love, and hope. The journey is never easy, but with understanding, assistance, and compassion we will weather the storm together.

I thought that I was dealing with this alone but I've seen the upset and pain that my family are going through too, We have all had a sudden shock with the recent news, It was when I looked at this through their eyes I realised It wasn't just me this illness affected but everyone around me in one way or another , So we are all supporting each other together,

Learning that I have this Liver Disease is not just a physical battle - Its also an emotional one, Iam still working my day to day job as my family is my biggest concern but I know at some stage I will be unable to for a period of time so - Your donation, No matter how big or small will make a meaningful difference in my journey, Every contribution will Help towards any home equipment that will help aid my recover and help relieve my worry of not being able to support my wife and kids when I'm severely unwell

It took over a year before I got my diagnosis as they thought it was PSB or PSC, My symptoms were severe itching causing me to damaging skin and Bleed , dramatic weight loss going from 85kg down to 68kg within months and not sleeping through the night along with more,

Currently Iam now under 6 week checks from the hospital but the hard part is knowing that its not IF but WHEN will I need my transplant with pains and discomfort becoming more noticeable,

Please check back regularly as I will post updates often and I will try to share more information about PFIC and the treatments as I learn them too,

Thank you for reading, your kindness, generosity and Support ❤️

Click here to understand the condition PFIC Liver Disease on Google or here at PFIC org.