A family history of HSP

Nichole, a 4th generation HSPer from NSW, tells her story …

“I was the first diagnosed of the largest affected family with HSP in Australia. But the signs were there before I was born, my great grandmother was always tripping over, my grandmother developed HSP in her 60’s but was very active in her earlier years. My mum is affected mainly from the hips up and could only walk short distances, but she went to the chiropractor and then she was completely cured! Didn’t work for those of us affected in the lower half. She is now in her mid 40’s and is getting wear and tear on one side of her shoe, so we assume  she might be degenerating into having it in the lower half too.

I was affected from birth, but like I always say, I seem to ‘forget’ I have a disability. I had an operation when I was 14 to correct the legs. I can’t remember the name of the operation, but metal rods were inserted into my thigh bones and then they were rotated, held in place by screws in the knee and hips. This ended up making the legs look better, but limited my mobility and increased pain. Just a warning for those considering having this operation, that there is a chance of it making things worse.

I have many family members also affected, my cousins seem to be having great success with the Botox injection, before my operation it only worked for me in one leg, so I’m saving up (as I’m now over 18) to see if it works now that I have had the operation. My cousins were also affected from birth and it was great having someone to relate to.

We created a game only people with ‘pigeon toes’ can play (not to be confused with turkey legs – that having the toes pointing out in the other direction!). The game was you had a ball and had to try and hit it into the gap made under the knees because of the heels sticking out, the problem was if you missed the goal you had just handed the ball to your opponent (so there for not having to run after the ball and not having to line up your legs as the ball is already there). Great game, I recommend it!

I did for a moment of my life do the recommended stretches of the legs, some success, but nothing spectacular, I guess I expected the stretches to ‘cure’ me. No one else in my family did them, so I felt less bad abandoning doing them.

My fiancé and I now have to divert our attention to children. I know with each generation it gets worse, but I personally would rather be alive and have these legs. So we might have decided on the DNA alteration. Personally I don’t know much about it, but everyone says it’s a great idea. My fiancé says it might cost thousands of dollars, but we’re both not sure.

I have never let my legs get in the way of enjoying life and I don’t think anyone else should let it too. I remember after my operation I was glued to a wheelchair, but still rolled around the forbidden city in Beijing and somehow climbed the Great Wall. Even though I was scared about how I would land, I still went sky-diving. Throughout my childhood rock climbing was my favourite sport, just use your arms more than your feet to hoist yourself up. But really the only things we can’t do in life are things where you have to have your legs straight i.e. skiing, skating and maybe even surfing, but go on and prove me wrong! Forget you’re ‘disabled’!”