Written by Isabel Brunkan
I had the opportunity to summit Mount Kilimanjaro (5,895 meters / 19,341 feet) as part of Osmosis and Elsevier’s Year of the Zebra initiative! An incredibly serendipitous trip, the Year of the Zebra honors the Orphan Drug Act’s 40th anniversary and rare diseases – the zebras of medicine. I am one of those zebras – I have a rare, life-threatening, genetic blood disorder called Hereditary Angioedema and my life has been saved and enabled countless times by medicines developed as a result of the Orphan Drug Act.
As a patient with Hereditary Angioedema, there can be times where one day I’m climbing a mountain, and the next I’m bedridden. Luckily, with modern HAE medicine I’m able to travel, explore and exercise safely. As part of the HAEi Youngsters Advisory Group, I hope to inspire other youngsters with HAE to see that having HAE can be a source of positive motivation to live life to the fullest and maximize the moments that we’re well.