Showing posts with label royal free hampstead. Show all posts
Showing posts with label royal free hampstead. Show all posts

Tuesday, 6 November 2012

Breaking news about thyroid disease

Today's prompt for Health Blog Post Month (#nhbpm) is to write a news style post, here goes:

Read all about it! 



This Saturday, 10th November, leading endocrinologist Stephen Robinson, will give a talk on the issues around pregnancy and thyroid disease at the Royal Free Hospital in Hampstead.*

The meeting is organised by The British Thyroid Foundation (BTF), a tiny charity with a massive challenge..  

Many families are directly affected by thyroid disease. It is very common - one in 20 of us in the UK have a thyroid disorder - yet they will have seen little in the media about it.  It is largely a hidden disease though in some cases has a devastating impact on people’s lives and can lead to miscarriage or pre-eclampsia if not properly treated in pregnancy. 

Anyone wishing to attend this meeting should contact Lorraine Williams to book a place. 

High profile thyroid patients have included the popular writers and broadcaster Clare Balding and boy wonder of the 2012 London Paralympics, Josef Craig.
The thyroid gland in your neck produces hormones for the cells in your body to work normally. When it goes wrong it can have wide-ranging effects.  Up to 20% of patients have symptoms that prove difficult to resolve.  Thyroid disorders can run in families; they tend to occur mainly in women, but anybody - men, teenagers, children and babies - can be affected. 
While often these disorders are easily managed, this is not always the case and many specialists agree there is still a great deal more we need to know about the thyroid and how it works.
Recent research has highlighted the very real hardship and distress that can be caused by thyroid disease, yet many doctors admit they are not as sufficiently well-informed as they need to be to fully help their patients. The internet can be full of rogue information and scare mongering about thyroid disease which can lead to confusion and distress among those affected.

Raising awareness about thyroid disease and supporting patients is vital. Most people would benefit from being better informed and prepared to deal with thyroid disease, should it happen to them or someone they are close to. 

Set up 21 years ago and still operating from a tiny office in Harrogate, North Yorkshire, heavily reliant on a team of volunteers around the country, BTF operates on a shoestring budget.  The charity desperately needs more funding to grow; to support the increasing numbers of thyroid patients who contact them, by providing information about their illness they often cannot find anywhere else, and to help fund more research into thyroid disease.

BTF works closely with the medical profession and other organisations[1], funding and supporting crucial research projects, doing their best to influence medical practice on thyroid disorders, ensuring patients’ voices are heard and creating a strong nationwide volunteer network.  But more needs to be done to meet the growing need from patients for information, support and advocacy, as well as to provide more funding and support for further research.

To find our more, or to make a donation click here to visit the BTF's website. 
*For details of how to register for Saturday's event click here


[1] BTF is a National Institute for Health Research (NIHR) partner organisation and collaborates with the following: British Thyroid Association (BTA), Society for Endocrinology (SfE), Association for Multiple Endocrine Neoplasia Disorders (AMEND), Butterfly Thyroid Cancer Trust, Cancer 52, Thyroid Eye Disease Charitable Trust (TEDct), Thyroid Eye Disease Amsterdam Declaration Implementation Group UK (TEAMeD), Addison’s Disease Self-Help Group (ADSHG), Hypoparathyroidism UK, and Sense about Science.

Tuesday, 5 April 2011

Radioactive Iodine Film preview at our event!

Well how exciting!!

Only a few days to go to our event and today we have agreed with the Nuclear Medicine Department at the Royal Free that they are going to preview a new Patient Information Film they're making for
patients considering having Radioactive Iodine Therapy treatment.

Our attendees will be invited to give feedback in advance of the final edit! The completed film will not be available for at least another six weeks.
  • The aims of the film are:-
    • To help patients understand the information that they are given before considering the treatment
    • To inform patients about how safe the treatment is and how easy it is to take.
    • To help patients understand the simple precautions which protect their friends and family for the first few weeks after treatment.
    • To provide a resource that patients can refer to if they want to review their precautions or any other information they have been given.
This is a short post because I've been doing quite a lot of preparation stuff for Saturday already today and I'm a bit tired :) but I thought it would be good to put a note of this most recent development.

We will also have literature and a representative from Expert Patient attending. It's all coming together. Are you coming along? You will need to email me to book a place.

I'll add some  links to this tomorrow. Now I'm off to cook some pasta for my tea. :)