My name is Ian, and I was diagnosed with the rare disease HSP about 20 years ago. In those days, there was no support group in Australia. The knowledge I gained about the disease at the time was found on the internet relating to overseas information, mainly in America and Belgium. I am now 66… Continue reading Ian



Hi, my name’s Stu and I’m 43.  I grew up with my mum, dad and sister in Melbourne, always surrounded by pets, I developed a love of animals from an early age. After leaving secondary school I went to Melbourne Uni, Dookie Campus, where I gained an agricultural science degree. While at uni, I met my… Continue reading Stuart


I’m in my late 50s and have an undiagnosed, untreatable spinal-cord problem which is causing progressive paralysis, with both of my legs virtually paralysed now.  I was fortunate to some degree that I had late onset problems as I have been able to have a great life so far. I’m happily married to my lovely… Continue reading Wil


I was born in Melbourne as one of six children, a set of twins at the top and another at the bottom. I don’t know how my parents did it, six children under six years old. My wife Julie and I had three children in six years, which was more than a handful. Our Christmas… Continue reading Greg


I was born in New Zealand where I grew up in a large family. My wife, son and I moved to Australia when I was 28 years old and we settled in the Blue Mountains where we have lived for the past 46 years. I was a Primary school teacher, which I loved but at… Continue reading Brendon


Hi, my name is David. I grew up in Canberra. I have led a somewhat normal active life, but HSP has now very much slowed me down. When I was about 15 I had surgery on my right foot to treat a condition known as Pes Cavus. I didn’t understand at the time what it… Continue reading David


Hi All, My name is Ken and I have had HSP probably all my life, wearing out the toes on school shoes and the front part of my tennis shoes obviously as a result of HSP. My father and his mother clearly had HSP but were never diagnosed and died without knowing the reason for… Continue reading Ken


Hello, I’m Margaret. My husband, Brendon, who has had HSP since about 2002, and I joined the HSP Research Foundation not long after it went online.   I grew up in a small village in New Zealand, attended high school in the nearby city, obtained a degree at Victoria University (Wellington) and taught secondary school… Continue reading Margaret


I was born in London and emigrated with my parents to Australia in 1960.   After a career as a hairdresser and salon owner I wanted a change in profession which led to 25 years working and volunteering for an NSW Wildlife Organisation, writing training packages, training and evaluation of members and creating an online… Continue reading Diane


‘Hi all. My name is James and I have had HSP for a number of years. It kicked off in 2008 and a blood test in 2011 confirmed that I have HSP SPG4. I am from the UK and I was one of the last $10 tourists! I travelled extensively round Europe in my teens… Continue reading James