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.
My prayer.
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
Molti baci,
Desiree xo
Oh, Desiree, I had not known this about the Phoenix. But you bring a smile not just to him, but so many of us worldwide. I will add him to my prayers.
ReplyDeleteI had not heard of this so I thank you for sharing awareness and I am so sorry to hear that someone dear to you is sufferring with this. I will pray for Your Phoenix and those suffering for sure!!....You look smashing love the green bag and headband! And Wow fantastic leggings...i love how you mix things up and it just works and looks great! ~love Heather
ReplyDeleteThe Phoenix is an amazing man! I can't imagine the pain, constant and unrelenting like the love you have for each other. Hearing about how this causes so much suffering in people makes me so sad. Life can be such a bitch but to have to endure this ah I just feel for him. Please kiss him gently for me.
ReplyDeleteI'm thankful you have each other, finding love is life's greatest gift. I'm keeping your whole sweet gang in my prayers.
Wuvyoumorethanthoseleggingsbuttheyaregorgeouslikeyou-
Krista
Oh gosh, I really had no idea what haeomophilia even was. Thanks for theeducation. The poor darling. I hope each day, for him, is a perfect one without any pain. x
ReplyDeleteThis is a really great post! I had no idea there could be internal injuries like that. Thank you for sharing all the info and links.
ReplyDeleteYour headband is hilarious. It looks like lettuces. x
Darling Desiree.
ReplyDeleteWhat a heartfelt post. I can't imagine how people with haemophilia can endure so much, your Phoenix is incredible.
And so are you, because I'm sure your love is the best drug!
Look at your wondrousness, those leggings are fabulous. But I'm sorry - that cannot be a dress! Come ON!
Whatever it is, you wear it beautifully well.
I don't pray, I'm afraid, but I will offer up whatever good thoughts and hopes and love to you both. You rock! xxxxx
I remember reading your description of your wonderful wedding to your Phoenix - where you added the detail of him not being able to walk far due to the extreme pain caused by haemophilia. It was the first time I really thought about what extraordinary strength it must take for someone with this condition merely to get through each day.I simply can't imagine how he does it, or indeed, how it is for you to be with someone you love so much who experiences this level of pain and discomfort all the time. What is clear however is the strength of love between you. And reading this heartfelt post is both humbling and inspiring (inspiring in terms of witnessing the strength of the human spirit to face adversity every day and to still find plenty of reasons to smile). Oh, and you have the best smile - just the best.
ReplyDeleteYour man of strength, The Phoenix, is so lucky to have a strong woman like you. Looking good as ever. M x
ReplyDeleteSuch a thought provoking, honest, and raw blog post. Lots of love and hugs your way right now xx
ReplyDeletebig hugs! xxx
ReplyDeleteYour hubby is lucky to have such a beautiful, wonderfully silly, inspiring, FUN woman by his side to lighten things up. Thanks for sharing this side of you & the deeper parts of your life. Much LOVE to you & The Phoenix -xo
ReplyDeleteA man with a strong woman by his side is a strong man himself.
ReplyDeleteI always thought hemophilia was just people get cut and can't stop bleeding. This really informed me about how it truly affects families.
I'll be sure to keep Phoenix in my prayers from now on.
you're not only überstylish and pretty but also the lover of a Lovely Man that inspires you! and I'm glad you're sharing with us all that feelings and cheering up the day with your great attitude!
ReplyDeletebesos & pretty leggings!
it's a horrible horrible illness but he's love lucky to have a fantastic loving wife like you to support him. Plus you look good in frilly knickers. xxxxxx
ReplyDeleteOh amor mio you know I always have you and Señor Phoenix in my prayers.
ReplyDeleteYou two are lucky to have found each other. I bet you make him laugh all day.
Look at you in those bad-ass blood bath leggings and see through delight.
another fabulosa headband of magic.
I do love your make up today tesorito.
Besonesonyourslap
Desiree, I''m praying with you - and maybe understanding a little of what you do for a family member with a genetic blood disorder. Except in my case, it's my youngest, The Teen, and her blood cells are sickled-shaped and hard, like dried up contact lenses, and sometimes get stuck in arteries, veins, and tissue, causing agonizing pain and speeding up the aging process of major organs. Living until age 20 was a pretty long time for someone with sickle cell. You still see a life expectancy of 40 on many major sickle cell websites. There's still no cure. The Teen is my little old soul, and I hope someday that she'll find her special SO who'll love her just as much as you love The Phoenix.
ReplyDeleteBTW, you look amazing. I'm such an idiot for those clasp-type purses!
To the beautiful Desiree, I want to write something that would seem to understand what life must be like for you, the Phoenix and family, but we each have things in life that seem so mean and unfair. All I know is that the people who deal with these situation appreciate what is really important, LOVE, laughter and kindness.
ReplyDeleteYou are all of this and much more.
Sending a heartfelt and big furry squirrel hug to you and the Phoenix.
Love v
I didn't realise this about The Phoenix, or that it was World Haemophilia Day. All my love & good wishes go out to those suffering from this condition. I only wish that they all had someone like you to help them through life.
ReplyDeleteP.S. You look incredible.
I didn't realize!
ReplyDeletePrayers to the Phoenix!
Hugs
Reva
Just keep shining your fantastically creative light. You bring much joy to him, and your readers.
ReplyDeleteI'm very sorry to hear about what The Phoenix goes through..I'm sending heaps of cosmic goodness and prayer his/your way. I just know that your hugs, smiles & laughter surely make a world of difference..you are an extraordinary soul with a very special energy. :) Thank you for educating me about this terrible disease.
ReplyDeleteI especially love this floral headband. Yum scrum! And the rest is flawless, of course. You are art. Beautiful, fabulous art. XO!
I can't imagine the challenges the Phoenix must face just getting through every day, even with your incredible sparkle and support to keep his spirits up. Thanks for sharing this with us, and providing information about Haemophilia.
ReplyDeleteI have long known about haemophilia, but had never known of it in "life" until The Phoenix.Bloody scary business.You and your dalring man are so brave, and he is so lucky to have you by his side whilst he struggles with this awful,weird disorder.
ReplyDeleteYou both totally ROCK,and rock on together!
On another aspect,I can't believe I have managed to miss some fabulous posts of FABULARSEHOLE FROCKTACULARNESS these last few days!I think I've been on another planet!You are GLORIOUS! I can't say it enough! I'm gonna rub myself all over you like a critter in heat next month..........
Love and lustipops!
XXXXXXXXXXXX
I'm so sorry to hear this Desiree. I'm embarrassed to admit that although I knew the Phoenix had haemophilia, I certainly wasn't aware of just quite how debilitating it is. I've always been a bit vague on the details and assumed it was only a problem if you cut yourself. I know better now.
ReplyDeleteYour love for each other is obvious though - you can help each other through life in different ways. x
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I am happy that you and The Phoenix found each other! Pain, joy, laughter, tenderness all mixed up in a life jumble. I am looking forward to the day when I read here that they've found a cure for this wretched disease!!!! Until then, breathe!! Thanks for this post.
ReplyDeleteGentle hugs for The Phoenix - You know he's so adorable that we all want him, don't you, Desiree?!
ReplyDeleteYou are both so often in our prayers ( mine are secular, I hope that they still count )
Love you and your wonderfully talented and amazing family, Dee.
Me, Fhi xxx
Oh my, I didn't know they bleed inside, how awful. I'm glad that the Phoenix has you and your family now.
ReplyDeleteAwesome outfit by the way.
I can't even describe what I feel after reading this post. I knew the Phoenix had problems with health, and I knew about haemophilia, but I never really understood all the problems and pain that comes with it. I can only hope that he can find some peace and happiness when you are by his side, supportive, colourfull, bubbly and cheerful you, as you always look to be in your photos. Lots of hugs and happy thoughts coming your way!
ReplyDelete