Information Day
March 1st 2010
On the 14th November 2009 I attended the St Marks Hospital annual polyposis Information Day with my husband Richard and our daughter Olivia. This Information Day is extremely important and beneficial to our family. Our daughter Olivia has been a patient at St Marks since the age of four and has now just turned eight years of age.
The Information Day is organized by the staff who work in the St Marks Polyposis Registry; in attendance were colorectal surgeons, other doctors, nurses and most importantly the patients and their families who all have something in common - their rare genetic diseases. The day gives us many opportunities to talk with one another and to meet new members.
This year the Polyposis Registry staff started the day off with a most informative talk about the role of the Registry and we were given lots of opportunities to ask questions. Next to give a talk was Ian Jenkins, a Consultant Surgeon, on keyhole surgery for FAP. He explained the procedure and talked about the benefits that came with this new and exciting surgery, this talk was extremely interesting and informative; wow how quickly things are improving.
After lunch the afternoon, as usual, was divided into many interesting and exciting workshops so that you can choose the ones that suit your personal needs and requirements. These included DIY Endoscopy, DIY Surgery, Polyposis for Teenagers, Poly Panel and Research and FAP - new technologies and future directions.
The day came to a close with lots of questions answered and a positive attitude towards our rare genetic diseases. I don't know what we would do without the help and support we receive from all at St Marks and our new friends.
It really is true what they say about this world centre of excellence, at this hospital they are the tops of the bottoms!
Why not join us for the next Information Day for people with polyposis and their families? It will be held at St Marks on Saturday 20th November 2010.
To sign up to receive a copy of the programme and a registration form later in the year just send your email address to: [email protected]
Helen
The next Information Day will be held at St Marks on Saturday 20th November 2010. The programme will be posted here as soon as it has been agreed but you can obtain a copy by registering your interest with the Registry just send us your email address and ask to be added to the mailing list.
If anyone has any suggestions for the programme please let us know and we will do our best to include them. Just click the "Contact Us" link below
PolyPeople a new Patient Support Group
March 20th 2009
In November 2008 a Patient Support Group was born during the annual St Marks Hospital Polyposis Information Day.
The PolyPeople group includes people who maybe newly diagnosed, experienced patients and their relatives and friends. We aim to provide support and information to anyone in need.
Our achievements since November are:
We have a name PolyPeople.
We have a logo.
We have formed a committee of seven Officers.
We have a web site in its infancy.
We all have two collective aims:
To support St Marks Hospital in any challenges to obtain funding for vital research.
To provide support to patients, families & carers of polyposis patients who feel we can help.
Anyone interested in joining should contact the secretary, Lynne Coote on: [email protected]
If you do not have access to email please phone:
The Polyposis Registry on: 020 8235 4270 and they will take your details and pass them on to me or Lynne and one of us will get back to you.
We would be delighted to hear from you.
Peter Grainger.
Chairman
PolyPeople.
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