In July 2020, aged 35, Laura Armstrong (@LadyFirefox on Instagram) chose to have her left leg amputated below the knee. A remarkable decision made after many years living with Fibrous Dysplasia and as a consequence, debilitating chronic pain.
We were lucky enough to catch up with Laura to chat through her condition, decision to amputate but most of all her incredible new life on one leg!
Growing up with Fibrous Dysplasia
Fibrous Dysplasia is a very rare congenital bone disease which causes the bone marrow to be replaced with fibrous tissue, its severity ranges from affecting one single bone in your body to numerous. In my case, it affected the fibula bone in my left leg. I was diagnosed as a baby after my parents noticed my legs bowed out which meant as a child I was in and out of Great Ormond Street hospital. I have always experienced pain in my left ankle as a result of my fibula bone growing too long.
Whilst living with FD as a child was far from 'normal', I could manage it with over the counter medication. As I grew taller, the pain worsened with my teenage years relying on steroid injections and then surgery in my early 20s. Sadly despite trying numerous treatments, nothing helped. I definitely felt it affected me growing up, I couldn't participate in sport and at school this sadly resulted in unwanted attention from bullies. I never really felt like I fitted in as a result of my condition and always felt different, I just wish I'd known then what a happy and fulfilled life I would go on to live!
The Turning Point
In June 2014, I noticed a lump on my calf which I thought was a cyst and genuinely just forgot about. But then a month later a second lump appeared and I went to the doctor, then to hospital where I had a procedure to remove them both. A month later, the lumps were back! Sadly it was only then that I had a biopsy which revealed I had an ultra rare condition called fibromatosis, a type of non cancerous tumour. Despite being in my left leg again, it was completely unrelated to the fibrous displasia. The options in terms of treatment were bleak, it would mean surgery coupled with chemotherapy every couple of years to shrink them. This was when I turned to the doctor and joked it would be easier to cut my leg off!
Treatment continued for the next few years, they removed the tumours but also a segment of bone as they believed it had spread. I also had chemotherapy 3 times and after the last session the oncologist mentioned amputation. I quite literally decided to do it right there and then, on the spot! I was tired of the chronic pain, by this point I was using a walking stick and taking large doses of morphine every day. I couldn't bear the thought of chemo every 2 years for the rest of my life so for me, it was a no brainer.
In July 2020 I made the decision to have the amputation, I had spoken to my friends and family at length and whilst the oncologist warned it may not stop the tumours, I knew it would ease the pain and for that reason my mind was made up. Sadly due to the pandemic I had to wait a bit until April 2021 but then I underwent the six hour surgery to remove my lower leg.
Understandably I was incredibly nervous in the run up to the surgery but when I woke up in recovery I wasn't in any pain (I was on a substantial amount of painkillers). I instantly pulled back the covers to see an empty space where my leg had been and thought 'right, ok then'.
I spent 9 days in hospital, starting physiotherapy immediately which involved one legged squats and leg raises on the end of the bed. I bought some Rainbow Cool Crutches almost immediately after my surgery, I wanted something to support my recovery properly whilst also showing off my personality instead of boring hospital grey. Whilst I still get phantom pains it is nowhere near as bad as it was before I had the surgery.
Life After Amputation
Following my surgery, I left my 9-5 job - it wasn't sustainable with my recovery and sadly they weren't overly flexible or supportive so it was definitely the right decision. Instead, I signed up to a modelling agency Zebedee Management who represent people with disabilities. After my first shoot, I was excited to see the pictures but can't explain how different I looked - every picture my face was brighter and happier, for the first time in my life I wasn't in agony.
I've documented my entire journey on Instagram and so many people have messaged me who are on a waiting list for an amputation. I always emphasise, it's not the end it is just the beginning. Getting my leg amputated may seem like a drastic decision, but it's given me a new lease of life. I don't regret it for a second!
- Remember whilst amputation is a physical change there is a mental impact, getting the correct mental support is KEY. Whilst I acted strong and positive, I realise now by not actually talking to anyone about how I was feeling, I did in fact leave myself in a much worse place.
- Remember this is your life and it's never too late to live it how you want. Don't be held back by what anyone else thinks of you.
- The best advice I've ever been given was from my mother, she taught me there is no point wasting your energy worrying about something which is out of your control. It has been my mantra for life!
A huge thank you to Laura for talking to us so candidly about her life and experience, we are in awe of her positive attitude and feel incredibly lucky she chose to use our Rainbow Crutches (and make them look effortlessly cool too!)
To learn more about Laura please click here.