Charlotte’s story

My name is Charlotte and I am an author, associate lecturer and PhD student. I have mannose-binding lectin (MBL) deficiency, which is a condition that affects my immune system. I also have a blood disorder that makes me anaemic. I am prone to lots of infections, have damage to my lungs and bladder, and am frequently tired.

Receiving my diagnosis was validating and life-affirming

I was diagnosed in my early twenties, after experiencing a few bouts of severe pneumonia, receiving a diagnosis for a blood disorder and having over 30 infections in one year. As a worrier, my health status changed my priorities. I don’t take anything for granted, I say ‘I love you’ every day to my family, and my diagnosis has amplified my empathy and understanding for others.

My family have been outstanding in their support and strengthen my vulnerabilities

One of the biggest issues for me is my phobia of needles. On my first treatment, I had a reaction to an iron infusion. My boyfriend, Dave, my mum, Jayne, and Aunty Tracey all travelled from different locations to ensure someone was with me. My father-in-law, Dai, has travelled to sit with me through these challenging treatments and my Grandma Joyce checks in with me daily. Their support has been vital to my response to this diagnosis. I am forever grateful. But I’m still working on the needle thing! 

My health is significantly improved since taking daily antibiotics

My health declined last year, owing to my immunity, but once I’d adjusted to the new antibiotics, my health improved. I get through my normal, everyday life by being extra vigilant with regards to hygiene, taking lots of deep breaths and trying to live as much in the moment as I can.

My advice to anyone newly diagnosed is you’ll do everything you want to do

… in your own time and in your own way. For now, just focus on putting one foot in front of the other and take it an hour at a time.

Posted 26th May 2020