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.

Saturday, 13 November 2010

Hospital appointments/visits

Harry's DEXA scan results came back as normal which Im so happy about, its shows that Harry's bone density is ok at this time. He has a Trans Echo Cardiogram coming up along with an appointment for a hand splint to help ease the pain in his wrists and keep them supported in the correct position.

Also Harry has to have ...further x-rays taken of his bones and also a Fasting blood test to look at his blood lipids,. Will make an appointment to arrange for a prescription of Emla cream to numb Harry's skin before the blood text otherwise he will not give his consent for a blood test as his skin is so sensitive that injections are really painful for him.