Gem’s story

Statistics

• Primary Sclerosing Cholangitis (PSC) is a rare condition that affects approximately 7 individuals for every 100,000 people living in the UK
• My stats for the last 12 months: Overall Hospital trips 71 including A&E: 26 times and 12 nights as an inpatient. 116 vials of blood taken. 6 ultrasound scan, 5 MRI’s, 3 CT scans and 5 X-rays. Too many doctor and consultant appointments to count! 
• I take up to 6 different medications per day, depending on if I am in a flare or not 

Diagnosis

My journey to a diagnosis was not straightforward, it was missed for years, my liver function test (LLFT) results were raised for over a year and a half! The raised LFTs were put down to the infusions I was on to treat Crohn’s disease. Then almost out of nowhere I developed severe fatigue, itching and yellowing of the skin. After multiple trips to A&E and being sent away with ‘possible’ gallstones, my body started to shut down. I became so unwell; upon admission I was told that my liver was shutting down. I was put onto the highest dose of steroid infusions, and I had multiple MRI, MRCP, CT and Ultrasound scans, a liver biopsy. That is when I was diagnosed with PSC/AIH. Given that it is a rare condition, few medical professionals I encounter have even heard of PSC. I count myself lucky to have a top consultant specialising in PSC.

About PSC

• The immune system ‘attacks’ the bile ducts, causing hardening and narrowing (strictures) making it hard for bile to drain from the ducts causing damage to the live
• It common to have/develop inflammatory bowel disease such as Crohn’s or Colitis alongside PSC
• The cause is not known or understood and there is currently no cure
• PSC is not associated with alcohol or drug use
• Symptoms are variable from person to person most commonly fatigue, itching, jaundice and ‘brain fog’

Reality of life with chronic illness 

How my conditions affect me every day:

• Fatigue 
• Joint pain
• Hypos as my liver cannot always regulate the blood sugars in my body 
• Itching skin (mainly at night) 
• Moderate to severe abdominal pain 
• Brain fog
• Insomnia 
• Depression 
• Anxiety (panic attacks)

To be blunt, I have had to all but give up my aspirations and goals I worked so hard to achieve. I am only able to work part time now and I am still adjusting to what a ‘successful’ day now looks like for me. I have ‘good’ and ‘bad’ days. Some days I am unable to get out of bed, drive, leave the house, care for my daughter, move more than a few steps, hold my phone, or stay awake for an hour or so at a time.

Some days I can get out for a walk, go to work, exercise, keep plans I have made, go out and see or experience new things. I was told I have PTSD late last year and I have on-going weekly therapy sessions to help me come to terms with everything. I have always been a fiercely independent and self-reliant person. Since getting sick, I have had to rely on my incredible support network of friends and family. My daughter is now a young carer and receives support in managing how my diagnosis affects her and gets some days out to just be a kid. I think a universal sticking point for someone with a rare condition is the guilt and sense of burden you feel every day. I draw strength and advice from the brilliant community on social media of others with the same conditions. Hearing other people going through the same thing or offering advice from personal experience is really comforting. I take advice from The British Liver Trust and Guts Charity organisations; they are great for current research and practical advice. 

I am now that insufferable friend that tells everyone ‘Health is wealth and we take it for granted until it’s gone’. The future hold what it holds, I continue to take each day as it comes, and I look for the glimmers.