Newslink

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.


 

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.

Read more...

September 2011 - I’m Still Standing (Just)

During a recent conversation with Ian, our chairman, I suddenly realised I was reaching my “3 score and ten” this year and having developed what I now know as HSP type 31 from pre the NHS (1948), I was probably one of the few people who’ve had experience of the condition and the progressive disablement that goes with it for a full lifespan.

Having been born into the back streets of Tyneside during WWII; with my two elder brothers evacuated and my father dead on active service I was brought up by my widowed mother and can remember being trailed around those white tiled school clinics with my funny walk.

Subsequently, as life moved on, I believe disablement isn’t a handicap but another tool in coping with the frailties and circumstances of life thrown at everybody as social and personal change take place. Having the disablement just gives you another set of tools others don’t have, to cope with life. Nature gives you compensatory senses and skills to help with what normal life throws at you, such as patience, heightened reactions and development of the other limbs and most importantly anticipatory survival skills (I always have a 2nd or 3rd backup plan to minimise risk to me). In my case, as I grew up, I was placed in normal schooling (not pleasant in the 50’s when you’re “different”) by mother who thought it best I learn to cope; went through to grammar school and into a 40 year career in the civil services because she told me I had to get a safe job as she wouldn’t always be there.

Read more...