Get Involved

Launching HPTH UK - July 2005

Do you remember those ‘magic painting’ pictures that you had as a child or that maybe your child has now? You painted the blank page with water and watched, enthralled, as a picture was magically revealed to you in vibrant colours? The Hypoparathyroidism UK website finally went online on July 15th 2005 and I have been intrigued and delighted to watch it being slowly brought to life by the varying brushstrokes of it’s members, contributors and forum participants. Such diversity of talent and skill! Such kindnesses! What I imagined would be a difficult and demanding task for a computer novice has turned out to be an inspiring and ongoing pleasure as I encountered so many great people.  So far we have 35 registered members, 20 forum members (not all the same people) and hundreds of visitors who have logged on to have a look around. There are also many of you who contributed your ideas, opinions, time or support all of which have helped to set up HPTH UK.  I hope this co-operative beginning will point the way forward and encourage a feeling of involvement in what is, after all, your own creation. Your joint efforts have given the website a particular character and you have helped to create a small, new but supportive community that grows daily.

Although we remain part of the wider community of the Hypoparathyroidism Association, it has been extremely interesting and encouraging for us to be able to set up a UK based group. Meeting people online from around the country, from places we know or live near, being able to talk about known hospitals, procedures and medication has proved instantly successful with new members because it feels familiar and safe. The feeling that we are building a community in which we can have some say, and be listened to, is immensely satisfying. The thought that there may one day be enough of us to have some effect on how we are treated here is hugely motivating. Getting to know each other, sharing experiences and feeling less alone is so good. Perhaps in time there will be regional meetings or maybe an annual get- together?

Obviously the website is quite basic at the moment but now we’ve been up and running for 6 weeks we are starting to make adjustments here and there. For example, some people seem to find it confusing to have to register for membership and again for the forum, so we are trying to clarify that.  As far as content goes, I am always looking for helpful and informative articles so if, in your research, you find anything, do let me know. During the setting up phase, some people offered to write about their experiences, so now is the time to send those in, please and I would be grateful if anyone has further suggestions that may help to improve the site.

We welcome all visitors and hope that you will join us to help build up a valuable network. If you are a UK member reading this and haven’t yet joined up, please do so that we can keep you informed of developments. We are also pleased to welcome our Irish and European members and have been contacted by the German HPTH site with whom we hope to exchange information on latest research. As one member has written ‘Interchange of information will be a valuable tool to help understand this and related conditions.’

Topics under discussion on the forum are wide ranging – questions about medications and treatments, early warning signs of low calcium, diet, newly diagnosed patients, and hormone treatment to name a few. We are collecting personal stories and hoping to build a list of recommended consultants. We are currently thinking about ways of publicizing the website throughout the UK so that HPTH patients can find us and have been accepted onto the British Thyroid Foundation website as well as others, which is a good start.  

However, this exciting start could never have happened without the help of several people who should be thanked publicly:-  

The wonderful Jim Sanders - where would we all be without him? His patient and encouraging responses to my endless questions gave me the confidence to go ahead with the idea and his continuing support and knowledge are just invaluable and mightily appreciated. 

The Board of the Hypoparathyroidism Association who put their faith in a complete stranger and agreed to fund the building of the website.  

Ivor Humphreys of Good Imprint, our webmaster, who designed and built the website, kindly continues to nurture it in his own time and meets all my ignorant requests with with wit and untiring patience.  

Marvellous Mark who rushed round to banish the 12 viruses that took up home in my PC the day before the launch.  

Ruth Pink, of Thyroid Cancer Support UK, for months of discussion to get us going on both these enterprises – and for never giving up. Without her this just wouldn’t have happened.  

Charlotte Ward, Clare Earps and Judith Taylor, busy people who not only volunteer their time to act as forum moderators but perform the task with humour and sensitivity. Couldn’t do it without them – especially Judith’s invaluable research skills. 

Dr Denise Adams and Dr Peter Swift who have so kindly agreed to give up their precious free time to act as consultants and whose professional presence is most helpful and reassuring.

My husband Bill and teenage daughter Kate who have lovingly and uncomplainingly backed me all the way for months now, but are, for completely different reasons, both very relieved now that I’m not spending all my time at our home computer!  

Everyone who contributed  their ideas, opinions, time and support – you know who you are – and to all those who continue to log on and participate in any way – thank you and congratulations on doing such a great job! I’ve really enjoyed meeting online so many wonderful people and have been humbled time and again by the lengths to which people will go to help out.  

So, HPTH UK has just been sketched out but hopefully will become a bigger picture, thanks to the willingness and enthusiasm of those who have become involved, and those who may do so in the future.  

Liz Glenister

for the HPTH Association September 2005 Newsletter

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