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Dystonia is the term used to describe uncontrollable muscle spasms caused by incorrect signals from the brain. The muscle spasms force the body into unusual and sustained movements and postures. This can affect many different areas of the body.
Around 1 in every 200 people either has dystonia themselves or has a close family member affected so it is likely you know someone affected. Click here to learn more.
Do you know who it is? It is possible they don’t either!
As it is estimated that 30-50% of people with dystonia are not diagnosed. Doctors often don’t recognise the symptoms and many people are being told they have a psychological problem.
Possible signs that someone has dystonia include:
Neck dystonia: The neck is twisting sideways or being pulled backwards or forwards involuntarily
Eye dystonia: Uncontrollable blinking or the eyelids forcing themselves shut
Hand dystonia: The hand makes strange, unintentional movements when writing or playing an instrument
Generalised dystonia: Abnormal, twisted postures of the hands or arms
Remember the person
Dementia Awareness Week will take place in England, Northern Ireland and Wales from 20-26 May 2012.
Remember the person is Alzheimer’s Society‘s annual flagship awareness-raising campaign. It’s a big opportunity to raise awareness and understanding of dementia and to get people to ‘remember the person’ behind the dementia.
More info: http://www.deafcouncil.org.uk/daw/index.htm
Brain injury doesn’t just affect individuals; it can transform the lives of entire families. Emotional and behavioural changes in the individual can affect relationships and the dynamic of the family. There may also be physical demands on the carer, while a loss of income can add additional stress to the family.
Caring for someone with a brain injury can require a great deal of patience and sacrifice. This year’s Action for Brain Injury Week will highlight the issues surrounding caring for someone with a brain injury while providing practical support to those who need help.
Headway carers’ workshop
A new workshop designed to help carers of people with brain injury better cope with the practical, financial and emotional challenges they face will be launched by Headway, with the first three courses taking place during ABI Week (14-20 May 2012).
Carers’ survey
We have recently conducted a survey-based study to examine the burden of caring for someone with a brain injury and the quality of life that carers experience. The survey is now closed and we are analysing the results, which will be released here during Action for Brain Injury Week 2012.
Hats for Headway Day
As always, the highlight of Action for Brain Injury Week will be Hats for Headway Day, which this year will take place on Friday 18 May 2012.
Put the date in your diary and look out for information on how your company, organisation, school or college can get involved!
Campaign posters
Headway has launched a range of posters to support the Action for Brain Injury Week 2012 campaign.
The posters highlight the fact that brain injury can affect the entire family, and that Headway is here to help those caring for people with brain injury. Brain injury can bring unique challenges to the family members of those affected. The hidden aspects of brain injury can often make it difficult for friends, wider family and even social or healthcare professionals to fully understand the pressures on those performing these vital caring roles.
You can download the posters below in two formats – one for general use and one for professional printing.
Related Resources
Free Comic Book Day is a single day – the first Saturday in May each year – when participating comic book shops give away comic books absolutely FREE to anyone who comes into their stores (rules vary from shop to shop).
The nearest participating shop to East Lothian is Forbidden Planet, 39-41 South Bridge, Edinburgh, EH1 1LL.
The Comics:
2012 Gold Books
2012 Silver Books
In 1983 Dr Graham Hughes and his team in London described in detail a condition – often known as “sticky blood”, in which there was a danger of thrombosis.
This condition – easily diagnosed by simple blood tests, affects millions of people throughout the world. The good news is that once diagnosed, the disease can, in most people, be treated, and further thrombosis (clotting) prevented.
Patients with the syndrome were at risk, both from vein thrombosis (including DVT’s), and in some, more dangerous arterial thrombosis, including a risk of strokes and heart attacks. In women with the syndrome, the “sticky blood” is unable to get through the sensitive small blood vessels in the placenta to the fetus, and there is a risk of miscarriage.
The discovery of the condition came from careful clinical observation. Whilst treating patients with a condition called lupus, Dr Hughes noted that some of his lupus patients had a tendency to blood clots, to headaches and even strokes and, in pregnancy, to clotting of the placenta and miscarriage.
Furthermore, Dr Hughes recognised that this group of patients could be distinguished by a specific blood test – the detection of so-called “antiphospholipid antibody”. He immediately recognised that the Syndrome could also occur without lupus – indeed, in the vast majority of patients, there was no evidence of Lupus, hence the name ‘primary’ antiphospholipid syndrome for these patients.
Dr Hughes gave the syndrome the name antiphospholipid syndrome (or APS). In the mid 1990s international colleagues re-named the syndrome ‘Hughes Syndrome’ to honour the doctor who described it.
Join FSID’s flagship Mile in Memory walk to honour the memory of someone special to you.
FSID hopes to see a host of Mile in Memory walks taking place across the country on Saturday 12th May. Most importantly, every penny you raise will go towards their aim of making cot death a thing of the past.
Organise your own walk
Join us on the day by organising your own one mile sponsored walk in memory of a loved one. Organising your own walk is easy and fun to do and FSID will give you all the help you need.
Order your Mile in Memory pack today!
What you get when you register your walk
• FSID Fundraising pack
• Dedicated FSID coordinator
• Tips and advice on how to organise your event
Join a walk
If you don’t fancy organising a walk but would like to support this event, then why not join a Mile in Memory walk near you?
See our map for locations across the country.
Contact Us
For more details contact Lucy at fundraising@fsid.org.uk or on 020 7802 3201
The aim of the month is to increase awareness of local history, promote history in general to the local community and encourage all members of the community to participate.
Activities happen across the UK and include trips, library exhibitions and local lectures. It is a great way for groups to highlight local history and for local people to get involved.
It is a perfect opportunity to visit the John Gray Centre, the new home of the East Lothian Local History Centre. Although based in Haddington, it holds records relating to the whole of East Lothian: from Dirleton to Whittingehame, and Musselburgh to Oldhamstocks.
Whether you’re doing family history research, writing a local history book or want to find out who once lived in your house, the John Gray Centre should be the first place you visit.
Further details on our services can be found via the website www.johngraycentre.org , including a new online catalogue that shows you the materials that can be accessed when you visit.
