It has been one year since Perth woman Chloe Christos “aired her dirty laundry” and spoke publicly about how she had bled for five years straight after her first period.
Within 24 hours, Ms Christos’ social media accounts were swamped with messages from women and girls around the world.
“My babysitter contacted me, old neighbours, all these girls I had sat in a school classroom with, all going through similar things,” she said.
“Before I knew it every time I opened my phone I had thousands of messages on my Facebook, email and other social networking sites, all reaching out.
“So many said to me I was just like them, they didn’t know someone else went through what they did.”
Ms Christos, 28, has Von Willibrand disease (VWD), the most common of all known bleeding disorders.
About one in 1,000 people worldwide likely have a symptomatic bleeding disorder, says Paula James, a leading haematologist from Queens University in Ontario, Canada.
“But far fewer have been diagnosed — in some areas less than 50 per cent and in others less than 10 per cent,” she said.
“It’s staggering to think of the suffering that goes unrecognised and untreated.”
Fight for life-changing treatment
Because Ms Christos has a specific mix of health conditions, her bleeding can only be controlled by factor replacement therapy, which is often used for haemophilia patients.
She said she had to fight to receive the treatment, but it has changed her life.
“Not only can I take care of myself now, I’ve got two puppies I take care of now too,” she said.
“In May I will have been in a relationship for a year which has never happened in my life.
“I can exercise, I hike, I travel freely — it’s liberating.”
Women urged to speak out
Today is World Haemophilia Day and for the first time the international campaign has focused on women with the message “Hear Their Voices”, which is a call for girls and women to share their stories.
“This … formally draws the line and places us on the map,” Ms Christos said.
“Because we do exist.”
Amber Powell, 28, from the WA town of Collie, is still waiting for a treatment that works for her.
“I got in contact with Chloe after I read her article,” she said.
“I got to a point when I was younger where I bled for five years straight too.
“I was ready to take my own life it was that horrible.”
When she was younger one haematologist told her she had VWD, before another said she had what is known as Bleeding Unknown Cause (BUC).
Daughters spur search for answers
Mrs Powell’s mother had a hysterectomy at 27 to end her own bleeding problems, but she wants to find answers for her two young girls.
“There have been times throughout my life where I’ve been so disheartened because it just seems so difficult to get to the bottom of it and you do get made to feel a little like a hypochondriac at times,” she said.
“But now that I have my own daughters I am trying to find out what’s wrong with me … although they don’t have their periods yet they still bruise the same, their veins are difficult to cannulate.
“If we don’t raise awareness and get funding for research what sort of life are they going to live? I don’t want them to live the same life I’ve lived, that’s for sure.”
Emma Hooper, 16, from Nabiac in NSW, also reached out to Ms Christos after she realised she was not alone.
“It’s awful, at its worst I will wear eight pads to bed every night… [and] set alarms to get up throughout the night and change them,” she said.
“It’s hard to go to school — I mean sometimes I will need to wear nappies and stuff.”
Ms Hooper has VWD which was discovered when surgery for tonsillitis as a 12-year-old turned into a nine-day post bleed, and the need to be placed in an induced coma.