Atypical Progeria Syndrome Harry's story

Hi, Im Harry Crowther, Im 24 years old and I have an extremely rare genetic disorder known as Atypical Progeria Syndrome (Non Classical Progeria) whereby I have a defect with the LAMIN A/C gene (LMNA). Though not to be confused with the classical Hutchinson Guilford Progeria Syndrome (HGPS) - both are Premature Aging Disorders. I was diagnosed in the USA aged 7 years old. Together with my Mum I keep this blog. Hope you enjoy my story.

Sunday 18 March 2012

ICE - In Case of Emergency - UTAG

Harry has worn a medical alert dog tag for a few years now, which informs people of his anesthetic alert and a difficult Intubation. However Harry now wears a dog tag with a USB stick attached which has his full medical details on. Progeria is so extremely rare that not many Doctors and medical professionals will see a case in their life time. So by putting all the details about Harry's form of Progeria on his dog tag gives them a better understanding and educates them in Progeria. Hopefully Harry will never have the need to share this information on his ICE dog tag and will keep safe from harm, but as the saying goes 'Better to be safe than sorry'.