Community Members

James

‘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… Read More »

Ron

Ron who is in his early 60s is from Geelong and has HSP. Inspired by his wife Ellenor’s achievements and success in rowing, Ron recently took up the sport. Ellenor competed in multiple events at the World Masters Games in Cambridge New Zealand in April last year. Ron watched a single rower with a disability… Read More »

Matthias

HSP. I wish it meant I had a Halal Snack Pack that I was eating and enjoying. But no, HSP is what I was diagnosed with in 2015. A lot of different people kept on asking me if I was okay because I had a limp when I walked. This was back in 2007. At… Read More »

3 comments

Julian

Hi, I’m Julian from Sydney. I’m 35 years old and all my life have been quite active. As a kid I played soccer and practiced martial arts. In my mid-twenties I spent a year in Canada snowboarding.   Seven years ago I was still playing AFL when I had to give it up at the… Read More »

1 comment

Dave

Dave’s family moved to the Port Stephens area when he was 10 and he has been there ever since. He is both a busy and a modest man, so this profile had to be written about him rather than by him.   Dave has always loved hard work. As a younger man he got experience… Read More »

2 comments

Suzie

I am living in Canberra with my husband Greg and dog Jesse. I was diagnosed with HSP SPG 7 in October 2016. I was living a really full life very involved with my children at their school in all their activities.   I was having spasms in my right side of my face, eye and… Read More »

2 comments

Jacqui

Hi, my name is Jacqui. I am married to an awesome cowboy. We have our own business, running livestock and selling meat in the Yarra Valley in Victoria. I am involved in the children’s school: on the Advisory Team, Parents and Friends committee, working in the tuckshop and the class rooms which I really enjoy…. Read More »

4 comments

Kate

I had a full career as an able-bodied actor for over 20 years, performing in everything from classics to musicals, and TV shows including Prisoner, Blue Heelers, Big River, Pygmalion, Buddy and Hotel Sorrento. I also worked as the main promotional voice-over artist for the ABC in Melbourne and have directed festivals for Melbourne Fringe,… Read More »

1 comment

Tracy

Hi, I’m Tracy. I had a normal upbringing and school life in Melbourne’s outer eastern suburbs prior to the mature age onset of HSP, as mine was. As a young child and into my teenage  years, I enjoyed training for and playing Netball – a legacy which our two daughters have carried on. I was… Read More »

1 comment

David

Hi, my name is David, I’m 50 years old and 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… Read More »

2 comments

Sharon

Hi there, I’m Sharon and have had HSP symptoms all my life, having many “medically guessed” diagnoses over the years such as Clicky Hips, Cerebral Palsy and Spina Bifida. Finally in my early 50’s, I got myself genetically tested and tested positive to the SPG3A gene. Mind you though, Spina Bifida was always easier to… Read More »

2 comments

George

Hi, I’m George, 48 years old and was diagnosed with Hereditary Spastic Paraparesis back in December of 2013. I have had back problems for the last ten years. Initially when i had back problems I used to get Spasticity in my lower back on most occasions that prevented me from going to work for a… Read More »

1 comment

Sharyn

My name is Sharyn. I’m originally from NZ having arrived way back in 1979! It was always my intention to move back there but work, children, pets and life in general have seen me enjoy a lovely life in Sydney near Manly Beach.   Ironically, my 24 year old daughter, having always said that I… Read More »

2 comments

Aleacia

Hi, my name is Leanne and my nine year old daughter Aleacia has complicated SPG3A HSP.   Aleacia is the youngest of my 5 children and when she was about 6 months old I noticed she wasn’t meeting her milestones. As she grew she could never sit unsupported, pull herself to stand or crawl other than… Read More »

Mark

Community members Mark and Dayna – father and daughter   Mark I grew up in Ferntree Gully in Victoria and am one of 6 children. Growing up I used to get told by my dad to “stop walking on your toes”. I was born with a gait issue (the only one of the kids to… Read More »

Roger

My name is Roger Simpson and I am 41 years old and live in the suburb of Mount Eliza, Victoria which is on the Mornington Peninsula. I am married to Simone and have three kids, Larni (7), Ryan (5) and Paige (3). Both myself and Ryan have HSP which I was passed from my father…. Read More »

Roger

My name is Roger Simpson and I am 41 years old and live in the suburb of Mount Eliza, Victoria which is on the Mornington Peninsula. I am married to Simone and have three kids, Larni (7), Ryan (5) and Paige (3). Both myself and Ryan have HSP which I was passed from my father…. Read More »

Donna

My HSP was confirmed in 2013 but it was suspected I had this condition. I am the only one in my family affected by this and have not passed the gene onto my children. I am a married 56 year old woman with three grown children and two grandchildren and work part time in a… Read More »

3 comments

Vicki & Emily

Vicki and Emily’s mother, Eleni has provided an inspiring story about her daughters.   I am the mother of 2 beautiful daughters both of whom suffer from HSP recessive format (not diagnosed via testing as yet). I wanted to share how proud I am of my daughters. They are true inspirations to me and to… Read More »

1 comment

Alastair

I was born in Melbourne in 1994, which is a beautiful city. I have a stepbrother and a sister and I am the eldest. While at primary school, I was like every other kid and had no signs of HSP. In my last years at high school I enjoyed Media and Studio Art. For my… Read More »

1 comment