My name is Diana. Hi to you all
I’ve had hsp since I was a child. Yes its most frustrating as no one knew what was wrong with me falling, tripping etc all the time. My poor mum took to so many Drs it wasn’t funny, so we just got on with it. Then in the mid nineties my family dr sent me to St Vincents hospital and I saw a Dr Darvenesia. He did tests which proved nothing, he said to me you’ll never be a marathon runner but your looks will get you places? I said to him I did come here to hear that, from a so called educated person.
I then had many mri scans at westmead hospital with Dr Sommerville to no answer again.
Finally I’m seeing Dr Grant Walker who told me I had HSP. I also donated blood for testing with a team at Westmead. They told me it was a waste of time and money. I was getting nowhere. Now we all know my son who is 22 has got a severe form of HSP, but a Genetic Dr at Westmead said he’d be fine? You know what, he’s not fine at all, and not coping with life most of the time. I can see me in him which makes me sad and helpless. He manages a meat company and is a chef by trade – nothing will stand in his way. I wish I had his attitude.
I was glad to attend the meeting at Westmead back in 2005 I think it was and there I met Robin Bligh. Finally things are getting done. Although it may not be in my time, I hope there will be a cure for this Disease for everyone out there suffering, just doesn’t seem fair at times. My strength is my mum she helps me go places as I hold her arm for support.
Gee I could go on and on with loads more to say. Just be good to one another and take each day as it comes.
Warm regards to you all,