27 year old woman, Chloe Christos, had her period continuously for five years. The Perth resident suffers from a bleeding disorder that prevents her blood from clotting properly, and when she first started to bleed at 14 years old, it simply did not stop.
‘Day to day my life was literally being cared for by my mother,’ Miss Christos told Daily Mail Australia.
‘I couldn’t do anything … I was fainting a lot, I had dangerously low blood pressure, and it wasn’t really a good idea for me to drive or go out.
‘I really love being physically active, and that is what was most frustrating for me.
‘Every single day I was in the sick bay at my school.’
Miss Christos said on average, women lose between 20 and 60 millilitres of blood throughout the course of their period.
Anything over 80mL is considered a heavy bleed, and people who lose that amount can be diagnosed with a condition called menorrhagia.
But in the space of just four days, Miss Christos could lose more than 500mL, or half a litre, of blood.
The art director and stylist told ABC News the condition saw her develop extreme anemia, and despite undergoing weekly iron transfusions, her iron level remained dangerously low.
‘I knew it wasn’t quite right, but I was also embarrassed to talk about it. I felt very different and pretty alone,’ Ms Christos stold ABC News.
Miss Christos, now 27, was diagnosed with Von Willebrand disease: an inherited bleeding disorder.
People with the condition have a problem with the protein in their blood that helps control bleeding, meaning it takes longer for blood to clot and for bleeding to stop.
Miss Christos also has low levels of the blood clotting protein factor VIII, a condition commonly associated with haemophilia.
Despite her diagnosis, Miss Christos continued to suffer.
She was put on a synthetic drug that targeted the low factor levels in her blood, but even after seven years, she continued to experience ‘terrible’ side effects.
The drug would stop the bleeding for about 12 hours, but as soon as the drug wore off it would start again.
She continued to look for treatment options, and it was even suggested she undergo a hysterectomy – a procedure she declined.
Miss Christos stopped taking the synthetic drug, but it only made her condition worsen.
‘It held me back in so many ways,’ she told Daily Mail Australia.
The Perth resident reached out to a haemophilia centre in Adelaide, and was given a blood product mostly prescribed to men who suffer from haemophilia.
The treatment – which she uses at the beginning of each cycle – worked, and less than one month ago she had her first regular period that lasted just four to five days.
‘It’s the difference between being hospitalised for two weeks of the month and taking two paracetamol and having a heat pack for one day,’ she said.
While she has found a treatment that works for her, Miss Christos now aims to advocate for equal rights to quality of care and access to treatment for women with bleeding disorders globally.
World Federation of Hemophilia chief executive Alain Baumann told ABC News that for years people thought only men could suffer from haemophilia, while women would simply carry the gene and not present symptoms.
Miss Christos has started a Go Fund Me page as she hopes to attend the World Federation of
Hemophilia World Congress in Orlando in July to further her cause.
On the page she shared her personal experience and the ‘discrimination’ she experienced when seeking treatment.
‘When needing assistant to help control severe bleeding episodes that there is a great lack of education and awareness about bleeding disorders and that they can happen amongst women,’ she wrote on her page.
‘I found it particularly hard at times for even doctors to treat me equally when presenting at emergency rooms and being refused treatment altogether because I’m either a female or not taken seriously, and still do to this day.
‘This has been mostly due to a lack of knowledge and awareness and this happens all over the world.’
Miss Christos said she would like to see the Australian government fund a data project for women with bleeding disorders.
She said it is often not known if drugs previously prescribed to men would be suitable in treating female related bleeds, and doctors are therefore reluctant to let women trial the drugs.
‘Getting the right diagnosis first of all is an issue in itself,’ she said.
‘Helping people find an adequate treatment plan, that’s another thing.’
Culled from: Daily Mail