Hi, Im Harry Crowther, Im 19 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.
Thursday, 3 May 2012
Paediatric Leg Gaiters
Harry received his leg gaiters from Orthotics yesterday. He has to wear them for 30 minutes a day to support, strengthen and hopfully straighten his tight hamstrings. We will start with just 5 minutes a day for the first week and then gradually build up the time.
They are bigger than I imagined and it is yet another reminder that he has a Progeria. They dont bother Harry so I guess that's the most important thing.