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.
She has been on various medication since then to treat her menorrhagia or what is increasingly being referred to as heavy menstrual bleeding.
When she was 13-years-old she was taking 10 birth control pills a day.
“When that did nothing they tried the rod, the one injected into my arm,” she said.
“At one stage I had one of those in each arm and then also had a Mirena intrauterine device (IUD) implanted.
“I feel I have no other hope, I’ve got one more option really, which is a hysterectomy.”
Ms Hooper said she was trying not to let it get her down, and had the support of her family, including her grandmother who had a hysterectomy due to her own bleeding problems.
“My nan has been to every one of my appointments,” she said.
“But I have a 10-year-old sister and I want to find something that helps me before she gets her period, although I’m not sure that’s going to happen.”
Women’s stories spark online platform
It is these types of stories which have led Ms Christos and her closest friend Jenna Lovell, a Tasmanian woman with a bleeding disorder, to create an online platform.
“It will be a place for girls and women, dads and mums, grandparents, hopefully medical practitioners, from around the world to share their stories and learn about the realities of what living with a bleeding disorder means,” Ms Christos said.
Ms Lovell, 31, is treated for her VWD through the private health sector in Tasmania.
While she has never had any issues accessing treatment for her bleeds, she knows that is not the case for most others around the world.
“There’s still a stigma around talking about periods,” she said.
“And what I see and hear quite often is a lot of girls and women around the world still having to fight for basic tests or to get doctors to follow through on the full process of assessing a patient’s bleeding behaviour.
“I hate to use phrases like gender discrimination and sexism, because if we cant get this right in Australia then what hope in the world do some of my friends who live in places like Kenya have.”
Their website — womenwhobleed.com — has gone live to coincide with World Haemophilia Day.
This post originally appeared on ABC News.
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