A PE teacher woke up blind from swelling after a rare and life-threatening illness was triggered by a car crash.
Claire Titterington’s life revolved around movement until a minor car crash five years ago.
In the months that followed, the 37-year-old began experiencing unusual swelling – which gradually worsened until her face ballooned so badly she couldn’t see and friends didn’t recognise her.
She was stunned to learn the cause – a rare, genetic condition which flares up, causing the extreme swelling, and which Claire believes was triggered by the crash.
“When my face swells, I’m unrecognisable,” Claire, from Blackpool, told Need To Know.
“My eyes swell until I am blind and my skin gets so tight it shines.
“It starts with a distinct burning pain before the swelling appears.
“Once it hits, the swelling is incredibly deep and heavy.
“The most frustrating part is how it migrates.
“It starts in one specific spot and slowly moves around until it takes over and I look completely unrecognisable.
“When it hits my eyes, it’s so aggressive that they shut completely, leaving me unable to see until the fluid eventually starts to drain.
“It feels like my head has quadrupled in size and between the physical weight of the fluid and the way it masks my entire face, the transformation is extreme.”
Claire claims that doctors explained the physical trauma and stress caused by the crash likely set off the condition.
She said: “It was just a small car crash where someone went into the back of me – it wasn’t a major accident but I broke my hand and nose.
“A few months later, I started noticing swelling but I brushed it off as being all in my head.
“The first time my face swelled, it got really bad.
“That night, it kept escalating until I had no choice but to go to A&E.
“When I walked in, they rushed me straight through because it looked like a severe allergic reaction.
“I was terrified but I kept telling myself I was in the best place to be.”
Claire expected to be given medication and sent home, but doctors struggled to treat the bizarre issue.
She added: “They started me on IV steroids and antihistamines but nothing touched it.
“I knew it was serious when I saw a nurse I actually knew, but she walked right past me because she didn’t recognise me.
“She came back later, shocked, saying she only realised it was me when she saw my name on the chart.
“The worst part was trying to sleep, knowing the swelling is always at its peak in the morning.
“When I woke up the next day, I couldn’t even open my eyes until lunchtime.”
Over the next 18 months, Claire was admitted to hospital 10 times, often for weeks at a time.
In one particularly severe episode, she spent 20 days on a ward while doctors struggled to understand what was happening.
It wasn’t until earlier this year that she finally received a diagnosis – hereditary angioedema (HAE), a rare genetic and life-threatening condition that causes sudden and severe swelling in different parts of the body.
HAE is caused by a deficiency in a specific protein, which leads to fluid leaking into surrounding tissues.
Unlike allergic reactions, it doesn’t respond to standard treatments like antihistamines or steroids.
Claire believes the trauma from the car accident may have triggered the condition.
She said: “The doctor asked if I had any stress or trauma and that’s the only thing we could think of that could have triggered it.
“They said they didn’t know why it started so suddenly but described it as something that can be just sitting in your body until something brings it to the surface.
“I’d never heard of the condition before but when I Googled it, I saw people who looked exactly like me.
“I felt relieved to have a name for it, but numb.
“Knowing it’s life-threatening and life-altering is a heavy weight to carry.”
While the facial swelling is distressing, Claire says the internal symptoms can be even worse.
At its worst, the condition leaves her bed-bound and unable to leave the house.
She said: “The facial pressure is intense but the internal stomach swelling is agonising, with violent cramps that leave me doubled over.
“It has completely stripped away my physical identity.
“I used to be the most active person in the room but now, I can barely go for a walk without being out of breath.
“It has taken my active self away from me.
“After 15 years of never being off, being sidelined has been devastating.
“You can’t lead a PE department when you are blind from swelling or in hospital for weeks.
“When the swelling is at its worst, I can’t leave the house or even see to move around.”
Claire is following a treatment plan that includes self-administered injections.
Now, she is speaking out to raise awareness of the condition and the realities of living with chronic illness.
“I want people to understand the toll of a chronic illness,” she added.
“It’s not just the days I’m swollen but it’s the side effects of the medication, the breathlessness, and the mental battle of losing the active life I loved for 15 years.
“It’s a complete life overhaul.”
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