Leanne's Journey: Living with PSC and Why Awareness Matters
Living with the rare disease PSC is extremely challenging. But with the support from family, friends, specialists, and PSC Support, Leanne remains hopeful and actively raising awareness and funds to find effective treatments and a cure.
My Diagnosis
Hi! I'm Leanne and I was first diagnosed with PSC in 2013 when I was completing my PGCE in Manchester. It began with extremely itchy hands and feet, overwhelming fatigue and marks on my skin. I had great friends there who encouraged me to be seen by my doctor.
After initial suggestions and differences of opinion, one doctor suggested I go to hospital for further tests - my Liver Function Tests were abnormal - and I was so lucky to meet a doctor who had interest in the rare condition, PSC. After several checks and tests, he felt confident that I was presenting with this rare, currently incurable disease.
Finding Support and Moving Home
Family being my everything, I knew I would need their support as there wasn’t much clarity on what the condition meant or what was to come. Therefore, once I finished my PGCE, I moved home to be close to my family and was referred to Birmingham QE.
My consultant, Doctor Ferguson, has been part of my journey since and I cannot thank him enough, or the incredible team, for their support, care and knowledge. Thanks to my family, friends and QE hospital, I have always had an extremely positive outlook of my diagnosis and live my life to the fullest, in the best way I can, knowing when I need to rest my body.
Life with PSC and Facing the Transplant List
I continue to work as a Special Needs Teacher in my new home of Cheshire. I moved from my family home in 2019, after meeting my partner, Adam, in 2014. Since then, we have undergone COVID and in 2021, my condition got to the point where I qualified to go on the Liver Transplant List.
This was a hard pill to swallow, as you tell yourself that it will never get to that point. However, with Adam, my mum, dad and other members of my family-along with my friends, workplace, QE and PSC support, I was reminded that I am extremely lucky to live the life I have and waiting for an opportunity to live a longer and healthier life is something that should never be taken for granted. I even got a tattoo with the PSC Support symbol included
The Importance of Awareness and Support
While there are days where it can be all-consuming and the hospital visits and medication are constantly there to remind you that PSC is serious. I feel that talking about it with your close ones, and only reading/listening to information from PSC support and the specialists is really important to keep those darker times at bay.
PSC remains a rare condition and unknown to many, you have to fight with your knowledge when going to people who don’t know much about it and I would advise anyone to always check in with their consultants when they are feeling unwell or to speak to PSC support.
For the lack of knowledge, for the hope that we can find why people suffer with PSC, and for the dream that professionals can find a cure, it is so important to raise awareness and spread the word.
Running for PSC: Raising Awareness and Funds
That’s why I was so grateful when my cousin, David, said he wanted to complete a half marathon on behalf of PSC; as did my partner, Adam. So any donation, big or small, would be so appreciated.
I hope that everyone going through PSC has a support network as wonderful as mine. However, please remember that support can always be found. I have met several people through PSC Support who I speak to; and no journey is ever the same.
I am forever grateful to PSC Support for their time; whether it is posting updates, organising talks or spreading awareness; along with the many consultants, nurses and the outstanding NHS teams within QE Birmingham for being there every step of the way. Thank you.
Thank you Leanne for sharing your story as part of Rare Disease Day.
