I grew up in Enoggera Brisbane and still live in the family home which I bought from my mum 32 years ago. I have one sister Gayle. My dad died when I was 16 years old. I am married to Narelle and have two children Lisa 21 and Benjamin 17. I was a panel beater for 13 years and then worked as a technician in Telstra for 23 years then became redundant. I am on a disability pension and my wife cares for me. I was diagnosed with HSP several years ago but did not get my blood tests back until January 2010. I alternate between walker and wheelchair. HSP not only affects my mobility but also my bowel and bladder and I suffer from back pain.
My hobbies are fishing, computers and tinkering down my shed. I used to do a lot of bicycle riding for fitness but am now limited to riding my electric recumbent trike. I love to get out on the bike track and enjoy the fresh air. I have modified the recumbent to suit my needs. I used to ride a handcycle that I made but with my back pain I can not do this any more.
I hope there will be treatment and eventually a cure one day for HSP. This disease has been in my family for at least four generations. Adult stem cell research gives us hope for the future.