Bailey’s Story

Hi, I am Bailey and I have severe haemophilia A.

During my childhood, I was an extremely active and imaginative child. I was often clumsy at times – and just like any other kid, I would often scrape my knees and elbows. However, Haemophilia never stopped me from enjoying myself and I was given the freedom any other child was given.

As a result of being outdoors for most of my childhood would come frequent bleeds in my left ankle. It was not until late 2018 I had been told that it was a target joint and that it needed to be looked at carefully. It came to my attention that having consistent bleeds in this ankle was quickly resulting in a much more serious issue and unfortunately this left me with arthritis.

Although my ankle stopped getting consistent bleeds as I grew older (due to being less active and more careful with my health), it eventually got to the point that I had to restrict myself from certain things, such as going out to see my friends and taking a day off college/university every other week to rest my ankle as it was starting to feel painful to apply pressure.

Although taking my Prophylaxis three times a week and taking paracetamol one-two times a day eased the soreness, it was still an underlying issue that had to be solved. With it being the start of 2019 and my second year at university slowly creeping up in the upcoming September, I started to feel concerned about whether my ankle was going to be fine by then. After many appointments and X-rays, to my pleasant surprise, I was told that an ankle debridement operation was going to take place in July.

July could not come any sooner! However, there were complications with the appointment, and it was moved to August 27^th instead, where finally it took place. Coming to the realisations of having my first ever operation, I was worried about how it would go.

In my head, having a bleeding disorder did not seem to mix well with being operated on but being surrounded by professionals was extremely reassuring as they constantly reminded me that I would be perfectly fine. The few days after my debridement operation were extremely difficult as I was completely immobile and had to stay in a hospital bed. I learnt to use crutches and I stopped using them in January of 2020. With the help of my amazing physio at Sheffield Hallamshire Hospital, I made quick and speedy progress.

I have since recovered smoothly since then and I hope to be a voice for those who have haemophilia and are suffering with arthritis at a young age. For the most part, my ankle is so much better. I can go running, cycling and trampolining again. As much as I want to be able to do these things consistently – I, unfortunately, cannot right now as I need to be careful that I do not injure my ankle as it is still in the recovery process. I have high hopes that I have a full recovery in the next few months.

It has been such a long and draining journey, and I have certainly gained knowledge and wisdom from this experience. It has taught me to be patient and to persevere. Dealing with this

My journey has not been easy, but it has been worth it.

Haemophilia is not your life; it is a part of your life.