Bloody bleeders ... they're always bleeding inside, you just can't see it.
April 17 is World Haemophilia Day.
You know or have met a haemophiliac.
You may have noticed a boy or man limping a bit, maybe stopping mid-step with a look of terror as sheer white-hot pain coursed through his body.
"Oh, it's just a bit of arthritis," they smile through the agony.
You think only women can bear pain?
The incredible strength these boys and men acquire in order to live a life so many of us take for granted, is simply astonishing.
They wear a "mask" to hide the constant discomfort of blood flooding into their joints, no clotting; just bleeding, bleeding, bleeding inside.
Imagine a baby wailing in pain as a team of medicos attempt to find a vein in that tiny body to inject the artificial protein, Factor VIII, which is limited or almost entirely absent from their blood.
This treatment continues throughout their lives and for those hundreds of thousands of unlucky males who live in countries where the prohibitive cost of FVIII prevents them from getting treatment for the Royal Disease, spare a thought for them today.
This genetic disorder which was treated between 1978 and 1985 with human blood products, wiped out 70% of the world's haemophiliacs in the 1980s and 90s.
The blood products were untested for HIV/AIDS, Hepatitis B and C and hundreds of thousands of families lost their sons, brothers, fathers and partners to these horrific diseases.
They trusted the medical treatment they were given.
My husband, The Phoenix, is a severe haemophiliac.
He is the love of my life.
Since meeting him, I have learnt to pray ... I pray to any being that is listening to help my love get through each day without the long, long arm of haemophilia reaching out to drag him down into the abyss.
Most days, all The Phoenix needs from me is a hug and a smile.
Sometimes I can make him laugh.
That's a really good day:)).
Headband - handmade, more fabulousness in my shop, Sassy Vamps!
Bloodbath leggings - Black Milk
Sheer frock (?!!!!!!) - American Apparel
Doc Marten's - retail
Vintage bags, 1980s sequinned silk top, bangles - thrifted
Earrings - Etsy
To you my gorgeous, petrol-head, funk-bass player.
Ti amo il mio Phoenix