During my high school years, age 12 – 18, I attended an all boys boarding school in Sydney. The school was/is well known, among other things, for its sporting prowess. Senior teams are almost unbeatable. This could be put down to the camaraderie built by living in close proximity to your team mates for the whole of the sporting season; it could also be put down to the fact that every student was expected to play sport. In my time at the school, during the summer you could choose cricket, tennis or basketball and in winter you could choose any sport you wanted, as long as the only sport you wanted to play was rugby union! Obviously, with a diagnosis of EPP (unheard of previously in the school’s experience) my parents met with the school’s head teachers and arranged for me to be excused from outdoor activity.
This week is Porphyria Awareness Week in the US, and guest blogger Mikey is discussing his experience of the impact that his EPP has had on his professional life.
Direct and indirect sunlight, from reflected light, is a real “killer” for me. If I can find a shadow, I can put exposed skin into that shadow to prevent that area getting burnt.
Unless you’ve got EPP you wouldn’t understand.
Clinuvel has invited guest blogger Mikey to discuss EPP on our blog; This is the second post in the series discussing the impact of EPP on life outdoors. We are grateful to Mikey for being able to share his experiences.
I was diagnosed with EPP when I was about 7. Australia is a great country. It is vast in its beauty and diverse in the hazards it provides! One of those, for someone with EPP is the “great outdoors”. I reckon this is the best country in the world. I’ve lived in New York, and travelled extensively around the world – I’m always pretty pleased when I return home.
Clinuvel has invited guest blogger Mikey to discuss EPP on our blog; a series we will publish in the coming weeks. We are grateful to Mikey for being able to share his experiences.
My name is Mikey and I live in Sydney, Australia. I’m 44 and have had EPP all my life. I grew up in Sydney with my parents, an older brother and a younger sister. Mum and I both have EPP, but neither of my siblings nor my father had it.
I remember, as a child prior to diagnosis, my family didn’t know what was going on with me when I’d been in the sun too long – except my mum who had experienced the same things I was complaining about.
“The fear of what lay ahead” is our latest webcast exploring the impact of EPP upon individuals, their families and loved ones.
Wendy and Ralph are the proud parents of two daughters, who were both diagnosed with Erythropoietic Protoporphyria (EPP), although their first daughter suffered for almost three years before the correct diagnosis of EPP was arrived at.
In this short film they discuss the fear, confusion and distress they endured as a result of grappling with EPP’s severity, invisibility and often unknown and misunderstood nature, all the while unable to treat or protect their children.
Clinuvel would like to extend its thanks and appreciation to Ralph, Wendy, Angela and Lyndal for allowing us to share their story.
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