Our newsletter, now named "NewsLink" has been published continuously since 1997. All available issues are published here. Browse through them using the links at the bottom of the page, or use the "search..." box above to find items of interest.


May 2012 - HSP – A Little More Time to Spare

As getting around was becoming more difficult, I stopped work half way through 2007.  I have always enjoyed getting around out of doors and so I set out to try and get round to seeing as many gardens in the Kent, Sussex and Surrey area while I was still able to.  I don’t go anywhere very fast now but hey, what’s the hurry?
As this condition started to take effect, I tried to travel around the world and see the places that appealed to me.  As that has become more difficult, I never cease to be amazed and delighted by the beauty of what we have on our own doorstep in the British Isles.

I have become conscious of how important my sight is to me to be able to enjoy these things and for that reason, have always felt a particular sympathy for people who have lost or who are losing their vision. About 18 months ago, I rang a local blind charity to see if they needed volunteers for anything. I was quite surprised to hear that they were looking for guardians who could help blind people make trips to the theatre, to cinemas and museums. I explained that with my disability I was more likely to be a hazard than a help! They thanked me for calling, took my details and said that they would contact me if any other opportunities arose.


February 2012 - HSP – Early or late onset?

My name is Brian Day.  I am 47 years old and have, along with eight other family members, been suffering from HSP since the age of three.
We have only been diagnosed with HSP from the mid 1990s after being labelled with all kinds of conditions before.
In that time I have met many of the HSP group members whilst attending both national and regional meetings.

As I am early onset and therefore only know life this way, I have often wondered, if I was going to have HSP, would I prefer to have developed it late on.
I realise this is an emotive question that may split opinion within the group, however, I wanted to try and cover this topic without being biased.