“At 24 years old, I am currently learning to walk for the fifth time after yet another life-changing surgery. One would never believe I was once a successful athlete, winning medals at the national level in athletics and horse riding events. Not in my wildest dreams did I ever think my life would come to what it is now. However, after 7 difficult years of severe chronic pain and limited mobility, I’ve finally learned to accept my disease and my disability.
I have a very rare and untreatable bone disease. It’s both frightening and devastating what it is capable of. Fibrous Dysplasia (FD) and McCune Albright Syndrome (MAS) is a one in a million rare disease. It turns healthy bone into fibrous tissue. This causes the bone to fracture easily, deform and expand, ultimately causing chronic pain. I’m not sure how many bones in my body are affected but it affects the bones in my right leg and pelvic area the worst.
It has caused the bones in my leg to bend and deform so badly I would lose my ability to walk time and time again from around the age of 17. What I thought were bad muscle injuries I now know were small, painful micro-fractures I was suffering once every few months for 7 years or more.
I was born with my right leg longer than my left, as well as a few other symptoms. My parents had suspicions through their own research I may have FD/MAS as a baby, however, no one they could find in the country seemed to know anything about it, nor seemed to care. The first time I broke my femur I was only 10. I was running through a field while training when all of a sudden the strongest bone in my body snapped underneath me. Doctors and other professionals were shocked and soon after that, I was fully diagnosed.
I was devastated by this fracture as I had a place on a junior triathlon team that went on to win the national championship and compete abroad. To make matters worse, I contracted MRSA in my wounds in the hospital post-op. It is a dangerous antibiotic-resistant infection and can be fatal. I spent 6 weeks in isolation in the hospital and had a year-long recovery. But before I was even off crutches, I was back on the horses and competing. This type of behavior continued for many years. I’ve always been a great patient but never once did my parents ever stop me from doing all the activities I was warned against. I risk my own physical health to be happy and to me, it’s worth it.
Break after the break I would return to sports and training and partake in all the wild things I’m so naturally drawn to until I got to my mid-teens. This is when things really took a turn. Running had been my everything since age 6, I’d always dreamed of competing in the Olympics and making a career out of it. But as I got older, I got slower and at 16 years old, I began to lose my ability to run. I dropped out of my athletics and hockey teams and soon later walking became a big struggle. My world as I knew it was falling apart. I had no real medical support and I was in complete denial as to what was going on. From this point on, just walking alone was causing me to suffer these painful micro-fractures in my leg.
Things proceeded to get worse. I was so angry with life and I genuinely believed one day my problems would disappear. Despite it all, I would make the very most of the months I could walk. At age 19, I moved to the French Alps for the winter season to follow in my mum’s footsteps and live the dreamy Alpine chalet girl life. After trips like this, I would always return home injured with small fractures and would be so emotionally distraught. I would hide away from friends as I was beyond ashamed to be seen injured again. I can’t explain to people why I could ski but not walk. Or how I used to cling to the counters of the bar I worked a 9-hour shift in but couldn’t walk the 2 minutes home. I did catastrophic damage to my bones from trying to live a normal life… it’s all I wanted, just to be normal.
My femur was bending more and more every year and my body was deforming before my eyes. I couldn’t bear to look at myself. I was spending more time on crutches than not and I soon stopped leaving the house. Would you believe that after all of the above, I had still never told anyone about my condition? I wore a prosthetic insole in my shoe to correct my limb length discrepancy and used to lie and blame it all on past problems. At 21 years old, I dropped out of university and soon lost my ability to walk for over a year and a half. This was the most devastating period of my life.
In March of 2019, my femur, which was now shockingly unrecognizable, snapped in the kitchen. It was the best day of my life. I spent 4 weeks in hospital and underwent a massive 8 hour and excruciatingly painful surgery to try and fix my leg. This was performed by a huge team, including my hero of a consultant. Due to my disease, I have no bone marrow in my affected bones and I suffered a horrendous amount of blood loss. Losing 40% of your blood is fatal, you die. I lost over 80%. Yes, it was a controlled procedure and a blood recycling machine had been flown in for me but I did not fully understand the magnitude of what I was about to go through. It took me weeks to mentally and physically come around. My body basically shut down for a while.
The only way they could straighten my femur was to remove 4 cm of bone. This would leave a normal person shorter in one leg, but not me. Now for the first time in my life, my legs would be nearly even in length. I was told to prepare to maybe never walk again but after 6 months I started to take my first steps crutch-free. The experience completely changed my life. Finally, I was able to talk about it with friends and I never felt so free. I even took up making macrame and turned it into a small business called Arla Crafts, which is currently thriving. I don’t think I had ever been happier.
Unfortunately after 6 short months of walking, the bones in my lower leg began to bend and fracture, and yet again, all my hopes and dreams were crashing down around me. In this moment I realized I am never escaping this disease. In August 2020, I made the difficult decision to ask to go through another risky surgery to enable me to walk again. I had my lower leg bones broken and reconstructed this March. I didn’t lose anywhere near the amount of blood that was expected and I avoided ICU. It was incredibly tough not having any visitors due to covid. It took a number of days or so to come round fully and 1 month on I’m at home but mostly bed-bound. It won’t be another 6 months or so until I’m walking again. But trust me, I’ll get there.
I’ve gone through a lot of physical and emotional pain since 2013 and have somehow turned things around. I stopped mourning the life I once had and decided to focus on what I can do rather than what I cannot. Despite not being able to walk further than a few meters I still managed to stay fit up until my recent surgery without even getting off my butt. I then began to share my own story, in hope of raising awareness for Fibrous Dysplasia and McCune Albright Syndrome.
My mindset has completely changed and I see things differently now. I’m not embarrassed about things like my limp anymore because I now realize having a limp must mean you’re able to walk. And what a gift that is. I get told by friends and even strangers I’m somewhat of an inspiration. I’m not so sure about that, but what I am sure about is I want to dedicate my life to spreading awareness for disabilities and my disease. I wish I could tell my 18-year-old self there’s nothing wrong with being disabled and that no one is perfect.
Hopefully, by sharing my story I can help others out there dealing with difficult circumstances and rare diseases. Your situation or health may or may not change but if I can give any advice, life does get better. Once you face your problems, the things that once haunted you, don’t seem so scary and sad anymore. You will begin to smile and love again. Life is full of memories to be made and opportunities to be had even if you have to go about it in a totally unique way.”
This story was submitted to Love What Matters by Carla Nicholson from Cork, Ireland. You can follow their journey on Instagram and TikTok. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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