Emily

Posted - June 2011 in Member Profiles

I was born in Burnie Tasmania in 1982 and been here most my life. Between 6 and 9 years old, I lived in Iron Baron, South Australia with my Mum, stepfather and sister. I loved living there and had a lot of fun with my friends, enjoyed riding my BMX bike and swimming at the pool there.

When I was in grade 5 (10 years old) I started showing signs of HSP but wasn’t diagnosed until my mid-teens. The worst part for me in the start was the teasing at school. I was embarrassed to go places when I was a teenager … felt like people would stare. I have grown to be comfortable with having HSP and that I can do anything I put my mind to. I now use a pair of elbow crutches to walk.

There is no one else in my family with HSP and my children haven’t any signs or symptoms of HSP.

Emily & Daniel

I have two beautiful children, Elly 7 years and Billy 4 years. They are healthy and happy and mean the world to me. I separated from the children’s father when Billy was a baby. It was one of the hardest things being a single mum. 6 months later, I managed to get my P’s drivers licence, which was something I was really proud of, as I never thought I would be able to drive. I have had my car modified with hand controls for the accelerator and brake, as I can’t feel the pedals with my feet.

I now have a wonderful partner Daniel who I met on Facebook. He is from Campbelltown, Sydney and has moved to Tasmania to be with me. He is a wonderful father figure to my children and a great support to myself.

I enjoy painting, drawing which I did a lot of in school, anything creative and hands-on I love doing – cooking gardening, car stuff, making jewellery.

In the last month I decided to create a page on Facebook, which I called Spastic Paraplegia Australia for people with HSP and their family and friends to communicate with others going through the same thing.

Link to Facebook page:
https://www.facebook.com/pages/Spastic-Paraplegia-Australia/199236076788479

Comments on this story

  1. Diana posted at 5:48 am on 4 August 2011Reply

    I live in Great Britain but was diagnosed with HSP just over 30 years ago now. I have tried to investigate further on this condition within Great Britain. I have had more luck recently. When I was diagnosed it was in the years of ‘patients not asking questions,’ and didn’t understand what was happening to my body. Over the years I have been given both Baclofen and Dantrolene. In recent years have had Botox injections as the Baclofen doesn’t seem to be helping as much. I regularly exercise to lengthen and strengthen my muscles. Almost 10 years ago I had Bilateral Hamstring lengthening also some work on the lower part of my left leg. My arms are affected, although, not to the same extreme. Unfortunately my daughter was diagnosed with this disorder 2 years ago.

  2. LINGARAJ posted at 2:04 am on 21 February 2012Reply

    Diana, I am 31 YEARS old and having symptoms – recently diagnosed with HSP. My symptoms are similar to you involving upper limbs. Can you describe your symptoms? Have you been gene tested? what were the results?

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