I currently live in Bothwell Tasmania with my partner Patrick, my two children Elly 10 and Billy 7, and Patrick’s daughter Jasmin 18. I have lived in Bothwell since March 2014.
When I was in grade 5 (10-11 years old, 1993) I started showing signs of HSP. I wasn’t diagnosed until I was in 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 teenager, felt like people would stare.
At age 19 I started using elbow crutches to help with walking as my ankles became weak and I would fall. I felt more confident in public using crutches as people wouldn’t stare as bad and would assume I sprained or broken my leg. I didn’t use them all the time or sometimes just used one.
In 2007 I decided I needed to get my license to help get around as I was a single mum with not much help with my two children. I had to be assessed by an Occupational Therapist to drive and was assessed as be able to drive with hand controls. By May 2008 I had my Ps and driving around in my car fitted with hand controls, which changed my life and gave me freedom.
The start of 2012 I went along to wheelchair basketball at Ulverstone to see if I liked it and have been doing it ever since. It is a great way to get out, get exercise and socialize. Since moving to Bothwell I have been going to Moonah and playing wheelchair basketball.
Around the age of 29 (2011) I put on 20kg from feeling depressed and not getting out, and from the weight gain needed to use crutches full time. Around November 2012 I was assessed for a wheelchair via the hospital Occupational Therapist department and approved by the end of December. I loan a wheelchair and shower stool, which I pay $50 per year in total for thru the North West Community Equipment Scheme. I had to wait til March 2013 for the wheelchair which now (August 2014) I use every day. I find everyday tasks less tiring now than what it would be like walking using crutches and I can do more with my children.
There is no one else in my family with HSP and my children haven’t shown any signs or symptoms of HSP.
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.
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?