Charlotte Evans was 12 when she experienced the first episode of an undiagnosed health condition that causes parts of her body to swell – sometimes for months at a time.
Now 19, she has had 66 surgeries to relieve pressure caused by the swelling and came within an hour of having to have her leg amputated.
Charlotte, from Downderry, near Looe in Cornwall, has also faced abuse from strangers who assume the scars on her arms were self-inflicted. She explains how her experiences have changed her.
‘I was really into dance’
I was completely healthy as a child and really into dance. I danced pretty much every day or did drama but then I got sick.
I had a pain in my hip and a lump. Then I woke up in agony – the swelling had spread across my stomach, down my back and my leg. It was just huge.
I spent three weeks in hospital but the doctors didn’t know what caused it. The told me they couldn’t find anything wrong and so it would never happen again. Those were their exact words.
A couple of months later I had the same thing in my hand.
I went to hospital because it was getting really painful. When my fingers started to get cold the doctors said I was getting compartment syndrome. That condition is known to doctors but normally people have it after an injury – they don’t know what causes it in me.
Each group of muscles in the arms and legs is contained in a space surrounded by tissue called fascia.
Acute compartment syndrome occurs when the pressure within a compartment increases.
It is treated in hospital using a surgical procedure called a fasciotomy, where a surgical incision is made to relieve the pressure.
That was when I had my first surgery. They cut down to the muscle fascia and left the wound open before closing it a couple of days later.
After that things just snowballed.
‘I had surgery 12 hours before my GCSEs’
Once I did a seven-month stint in hospital without leaving. My mum is amazing and slept in a chair that whole time.
It was hard in paediatrics because it felt like they weren’t doing anything and they started telling me there was nothing wrong even though these episodes were still happening.
I had to grow up quickly and struggled to relate to people my age but I was also quite immature because I hadn’t experienced a lot of what most normal teenagers would.
When I transferred to adult care it was quite daunting but it has been better, largely because they’re not afraid to try new things.
My attendance at secondary school was around 40% and I even ended up having to do my GCSEs in hospital.
I took my first exam 12 hours after having surgery while on a morphine pump.
I do wonder if that worked to my advantage though because I couldn’t have been more chilled about it all and I passed all of the ones I took with As and Bs.
‘I nearly lost my leg’
In March 2019 I got a swelling in my leg. I was in hospital for regular treatment and one of the doctors I know really well walked by.
They asked how I was and I said ‘my leg looks like this’. I didn’t have a pulse in my foot.
The consultant said they thought it was too late. The leg was black and they thought it had already died. They said they would have to take it off.
I signed the consent form so I expected to wake up without my leg but I did wake up with my leg, which is great.
They said had it been an hour later it would have been a different story.
‘People think my scars are from self-harm’
The more surgery I’ve had the more prominent my scars are.
Quite often people think they are from self-harm.
Recently I was in a lift at hospital and a middle-aged man said he thought it was disgusting and selfish of me to be self-harming while people were suffering and dying of coronavirus.
This was extreme but it is not the first time I’ve been called disgusting and hideous. People in college avoided talking to me because they thought I’d have emotional baggage.
It’s surprising how in this day and age where we all seem to think we are more accepting of people – and a lot of us are – but there are a lot of people who also aren’t.
If that’s what I get I can’t imagine what some people who do self-harm get, so no wonder it’s so hard to talk about mental health.
I don’t hate any of my scars. I got the butterfly tattoos on my right arm as a way of reclaiming it.
‘This year has been really hard’
I’ve had eight episodes this year. I’m starting to have more complications – they’re not healing as well as when I was younger.
I have a treatment now. It works mostly. I still have episodes but less than I was. In terms of why it works, they don’t know.
I think they’ve looked all over the world to see if they can find anyone like me and they haven’t been able to yet. They’re looking for other treatments but it is hard when you’ve got no idea what is wrong.
I try to stick the episodes out at home because otherwise I’d always be in hospital but if it’s getting really bad I’ll go in, either because I need surgery, or if it’s in the hip I can’t move very well, so I need more help than Mum can manage.
If it’s in a limb it has got nowhere to go once it is there. It can’t spread out so that’s when I need surgery.
In the back or hip it can spread as far as it wants so I don’t need surgery but they can get out of control and last for months.
Even once they stop actively doing their thing, the blood in the swelling goes solid so then it takes a long time to break down.
‘Missing dance tortured me for years’
I gradually realised there are a lot of people with conditions that haven’t got a diagnosis.
It’s hard because you are hidden and sometimes doctors don’t believe you. That’s the biggest issue. I find you constantly have to prove yourself and not get upset or they start saying it must be stress-related.
The other thing that gets to me is missing dance. That tortured me for a lot of years. Musical theatre was my career plan from a young age. I did dance, drama and I started singing to make sure I was set up for it.
I’m starting to do some dance classes again, which makes me nervous because I worry my condition will affect how much I can do.
I quite often only have a small gap between episodes so I just use that gap to do as much as I can because I know in perhaps two weeks I won’t be able to.
I hope my condition will calm down and they can get it more under control.
I’d love to be able to go back to dance full time and get good at it again but I don’t want to get my hopes up.
I don’t know if I’ll be able to do musical theatre, you never know, but perhaps the best things are what you land on, not always what you planned.
As told to Johanna Carr