Meet 17-year-old Marnie-Rae Harvey. For the past several years, she can’t really go out and has no friends any more because she’s “always in the house”. Now she has experienced unexplained bleeding from different areas of her body.
— BBC Newsbeat (@BBCNewsbeat) March 11, 2016
Last summer, the condition began to affect her eyes. She’s seen eye specialists, gynaecologists, haematology experts, neurologists and paediatricians to try to find the cause.
“It burns and then if it covers the pupils of my eye I can’t see,” she tells Newsbeat. That continued for a couple of years until she woke in the night in July 2015 with her face covered in blood. She was bleeding from her eye.
Her parents called an ambulance. “The paramedics were just shocked because they’ve never seen it before,” she explains.
Her mother said: “Every morning I have to shake her to see if she is still alive. It’s absolutely devastating. It happens every single day. We’ve just gone through 12 days of solid bleeding from her tongue and scalp. She is sick four or five times a day, vomiting blood.”