Donna with husband Colin and granddaughter Aliza
Donna with husband Colin and granddaughter Aliza

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 job I love in a preschool office.

I always loved to walk – bushwalking and walking my dog but I noticed at about age 45 I was becoming increasingly clumsy and was tested for various diseases and had MRIs. I was walking with two dropped feet and having some falls. I have since had tendon transfer surgery on both feet and have had pins in one foot to straighten my foot and to assist with walking. I am now walking with a stick and whilst it is slow going I still do love to walk. To try and maintain muscle strength in my legs I have taken up swimming (1 kilometre twice a week) and pilates – I enjoy these both enormously and could recommend these to anyone for body strengthening.

I find myself always searching for the perfect shoe! I do wear orthotics and favour ASICS but if anyone can share their experiences with a comfy shoe I would love to hear it!

I am independent but am always grateful of the support I receive from my husband. We accept the limitations HSP has put on our lives but there is still so much we can do!


  1. Dear Donna,
    I have been using Toe-OFF orthotics which I find help to prevent tripping

    kind regards


  2. Hi, my HSP was confirmed in 2005, my last year of teaching Kindergarten for 39 years. I am the only one in my family with this and have not passed it onto my children or my two grandchildren. I saw a TV show with a man that had some of the same symptoms that I had. This doctor was in Rochester NY who got me into NIH.They did the gene testing and found out that my 48 gene was defective. Dr Blackstone said that I was 1 in 5 in the world with this defective gene. None in the US. I also use shoe goop to make my shoes go longer. God bless

  3. Hi Donna, I have found womens Skechers Shape-ups sandshoes work for me. I havent been able to buy them in Australia although there are Skechers stores here. Shoebuy (American) on the internet has been the option for me. They have a ‘rocker’ bottom (sole) which keeps me from kicking my toes into the ground and tripping over. They take a little while to get used to, Im 59 and its 15 years since I have had the HSP diag and more recently I’ve found a walking stick useful. All the best, Merron.

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