Rainham schoolgirl with rare swelling condition vows to raise awareness
07:00 05 June 2014
For most 11-year-olds, the greatest threat posed by an iPad is square eyes – but for Milan Govia from Rainham it’s a very different story.
When she dropped her tablet on her face her lips swelled up four or five times their normal size and took two days to go down.
Milan, a Year 7 pupil at Chafford School, has a rare condition called hereditary angioedema (HAE), an inherited blood disorder that can cause swelling in various parts of the body. Sometimes incidents are a response to trauma, sometimes they are apparently random.
It affects less than 0.01 per cent of people worldwide, and Milan is one of its most serious victims.
“It’s changed a lot of my life,” she said.
“Most of my family don’t have it that bad but I have it very bad. I can’t ever do a full week at school.
“I have to be really careful about banging myself. If I knock my hand or hit my leg, it swells up. I dropped my iPad on my face once and my lips swelled up.”
On this occasion she recovered and didn’t require hospital treatment, but other episodes have been more serious – like an apparently random attack in January 2012.
“I said to my mum I don’t want to sleep because my lips were swelling up, and my mum said she’d stay up and watch me.
“When I went to the hospital, there were two paediatricians and two nurses with me the whole time.”
And just last week her arm started swelling with no warning.
“It was so big – you can’t move it,” she said. “I just had to leave it. When it’s gone down it’s fine but when it’s up it’s like a burning pain.”
But the brave young girl does not want sympathy – she wants to raise awareness about the condition so more can be done to treat it.
“I think it’s definitely left behind,” Milan said. “There’s a big deal being made out of other conditions, but there’s not enough being done about mine.”
Milan thinks if more people are aware of the condition, there will be a stronger case to spend public money on treatment and medical professionals will find it easier to diagnose.
She said: “I need to stop HAE patients suffering in silence. We need help – our lives are at risk. I am only 11 and have had over 150 attacks in my lifetime.”