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On 22nd Dec 2009 I suffered a deep vein thrombosis in my leg which resulted in a life threatening pulmonary embolism (blood clot in the lungs)...I was in a Spanish hospital, it was a 50/50 live or die situation. That night I repeated over and over, "I want to live, I want to live," and thankfully I survived.

I was later diagnosed with the autoimmune blood condition called Antiphospholipid Syndrome. I'm determined to live and thrive despite this invisible illness. 

By creating this page I seek to raise awareness of the condition and raise money to find a cure for myself and others who suffer from the same.  This illness affects mostly women although men also suffer from it.  It causes miscarriages and stillborn births, one of the reasons I do not have children.

I was in hospital for one month. During that time my Mother phoned me from England everyday. Thanks so much to you Mum. I love you deeply. It took 18 months to recover from the effects of the Pulmonary Embolism and years longer to learn how to deal with the ongoing underlying autoimmune illness of Antiphospholipid Syndrome which is otherwise known as Hughes syndrome after Professor Hughes who discovered it. I experience debilitating fatigue and other daily complications such as brain fog/confusion migraines and more. 

I often hide how the illness affects me as I have found people simply cannot or do not want to understand. Yet I refuse to let this illness control me and believe I push myself harder as a result to live my life the way I want to. Now I prioritise the things I have to do, or want to do in my life, in order to live despite this chronic illness.

I dance, sail, snowboard, swim, skate because I have a passion for life.....I exhaust myself in the name of having a life and doing the activities I love. I do this within the boundaries of safety and what I enderingly call sofa recovery days! 

Modern medicine protects me. Somedays I suffer from fatigue with no energy to get out of bed or off the sofa. Often this is payment for my enery expenditure. In other cases the energy may simply have been used to do a day at work or simply to get a shower. The payback may simply be low grade syptoms such as red gritty eyes or dizziness, however this is my reality for the rest of my life. All of this is invisible to others, which is why I seek a cure.

Having this autoimmune condition is like being a mobile battery that will not charge properly.  Sleep does not recharge us fully. There are many with the same illness who find even walking a challenge. The medicine we take makes us more sensitive to the sun or "thins" our blood to prevent blood clots, it is prevention against more clots but it is not a cure.  I consider myself as fortunate to be alive and will continue to pursue my dreams.

As an ex fitness professional I consider myself lucky I was physically strong enough to survive and will continue to maintain my physical fitness and enjoyment of life through my active hobbies which aid blood circulation through exercise.

So here we are 10 years later in December 2019 at my 10 year "Clotiversary"....Antiphospholipid / Hughes syndrome was discovered by Professor Hughes in the 1980's.  As a teenager I experienced a classic symptom which is livedo reticularis on my legs (A blue or red lacy pattern). Therefore I've suffered the illness long before i was diagnosed and perhaps from birth (Since its never been proved whether its a genetic thing or not).

This syndrome was not diagnosed until a life threatening blood clot blocked my oxygen supply. Many GP's are not aware of it. When I turned up at the normal doctors complaining of shortness of breath and my lips turning blue, I was told to take paracetamol and rest. 

When my leg swelled up a few months before finding myself in intensive care, the nurse told me she thought I had simply been standing up for too long causing swelling.

This page is to increase awareness of this condition as a cause is yet unknown. Please help to fund research and find a cure.

Thank you for your time and hopefully your donation!

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