40K in UK's Page
Latest Activity
Hi Elaine,
From across the pond and following your entries and content on this discussion group and unaware exactly where Manitoba is (heard of it but couldn’t put my finger on it) I reverted to Google.
Maybe an obvious question but I assume you a…
BKaren
You may find the following press release useful in getting the point across to Debby Garner.
Promoting Dystonia Awareness in the UK
http://www.dystonia.org.uk/sitemap.html
You will find a fair bit of information on the above link ("Dyston…
Noely,
Don't forget that Dysport (Botox used in UK) has now entered the USA market - so its not just Allergan who has the monopoly. I foresee that Dysport will be aiming to capture a fair slice of the Allergan market, albeit for cosmetic use, throu…
Hi Joanne,
In answer to your question - Can anyone else find a connection with head trauma?
Can I bring your attention to a film called “Twisted” by Laurel Chiten. It is well worth seeing.
Have seen it on UK TV – albeit on remote and lo-profile S…
If you are travelling to Europe or to countries who use an european language - have you considered contacting some of the eurpean dystonia support groups. Some also produce downloadable leaflets on dystonia conditions.
Try this link which has furth…
I found these two links by chance on Trombonists with Embouchure (Focal) Dystonia.
The first is a YouTube link where “In a collection of films Dave Scragg (Diss Norfolk UK) explores the understanding and treatment of Focal Dystonia as an emotional…
Yips, Estimations and Dystonia Awareness
Since I have been involved with Dystonia, not as a patient but as a partner of someone with Cervical Dystonia (Spasmodic Torticollis), for the past 4 years I have been fully aware that Dystonia data consists…
Thanks Ian for this new info. It makes me once again question IS DYSTONIA a SENSORY disorder.. where sensory processing in the brain has just aray or wirey causing the symptoms of dystonia ?? \
Anyone else ??
beka
So rewarding to hear of a great dystonia news item on mainstream USA National TV - also such a heart warming story.
I thought that Wego Dystonia Health activists may like to see how Dystonia is reported in the UK through the following articles in t…
If you are trying to do research, you should try looking into biofeedback rather than looking specifically looking at this device. The one reference that the website makes to medical research using the device is to a poster session or talk at a medi…
Ian,
Like all treatments for dystonia the person giving any type of therapies it must be persistent and knowledgeable of movement disorder's and because dystonia cannot be cured with therapy, the patient must be motivated to continue even after leav…
Found this website by chance today using “Ask Jeeves” and typing in “dystonia”.
http://www.dystofit.com/dystofitdevelopment/index.html
It’s basically an Austrian site advertising a training device called DystoFit which has apparently two high-qual…
This group is moderated and hosted by Beka Serdans, RN, MS, NP, founder of Care4Dystonia.org.
Profile Information
- In the online health communities I participate in, I'm:
- a Broadcaster (Getting the word out)
- More about me (my health interests and reasons for joining WEGO Health)
- My motive for joining Wego Health - to be a campaigner for Dystonia awareness
It appears that all figures for Dystonia are estimated. There are some good support groups in the world with “Same aims – different priorities” (i.e. Research, funds & support for patients). Togetherness & Co-operation seems to be a problem. Do we need Societies and support groups – yes we do – united ones - working together.
Dystonia News articles generally go unnoticed – frequency of news articles is low – also of local interest rather than national. There are no “really” famous people in the world with Dystonia. Unfortunately, Oprah shows are not shown on UK mainstream primetime TV channels.
There are approx 400 million people in Europe and if estimates are correct the number of people with Dystonia (1 in 1500) is around 260K. The number of Dystonia Patients in EU Dystonia Societies is approx 13K (5%).
The population of the USA represents about 10% of the world’s population – with Europe this represents 20%. Dystonia is a Global problem – what’s the rest of the world doing?
It has been stated that there are 36,000 registered GP’s in UK at any one time. With an estimated 40,000 people with Dystonia (in diffent forms) how many Dystonia cases will a GP see in his/her working lifetime? Here perhaps, is one of the problems.
In a small way by joining Wego Health maybe I can help
Comment Wall (1 comment)
- At 11:05am on May 27, 2009,
Vanessa_Rhinesmith said…
- Welcome to WEGO Health!
Thank you for sharing your struggles with Dystonia - and for starting the global conversation. I would encourage you to participate in the conversation in the Dystonia community. They are an amazing group that has much to offer - both support and information. We also have many other community groups to fit any interest. I that you check them out.
I also wanted to encourage you to take a few minutes to participate in our What Type of Health Activist Are You quiz. It's easy to do, and since you're already a WEGO Health member, it helps fill out your profile!
Please let me know if you have any questions about how to get started - or if you can't quite find what you're looking for.
Be well,
Vanessa
Visit me
Follow us
© 2009 Created by Marie
