Dystonia Society


If you’ve just arrived as a Pioneer member this is where it all begins. HealthUnlocked is a social network for health advocates like yourself to start an online movement. It’s about reaching other people and pooling together a mixture of information, support and experience to empower and change the lives of others. Most people with similar health interests also have something unique in their own experience that can help others. Everything here is designed to help you unlock the power of the crowd.

Back in 2007 I was a resident surgeon in a leading UK hospital. Our government was launching a series of changes to the way specialist doctors like myself were being accredited, and 99% of us felt it was a damaging step for the nation’s health, harmful both to us and future generations of patients we’d be treating. Big health institutions weren’t interested, so myself and a handful of doctors got together online. We started bringing more and more doctors into the group through the web. At first many thought we were crazy but quickly we became grassroots advocates for a generation of UK doctors, and in a couple of months we had a movement of 15,000 that provided support, inspiration and information to each other. We organized the biggest medical rally in UK history, an ongoing media campaign and, eventually, a high profile legal action. We got the health reforms radically changed for the better. See the article: bit.ly/R3tCM4

I learnt a lot about the immense power of togetherness, so when I joined forces with Jorge (our CEO) to dream up HealthUnlocked one of the main goals we shared was to make creating an online movement easier for inspired health advocates like you. From my own experience the importance of the group pioneers is the key.

That’s why you being here and reading this today is an important moment. In my experience if you can summon up the persistence to connect with other pioneers, create some activity, and trigger the spirit of a community, there’s no end to what you will go on to achieve together.

This 3 minute TED lecture speaks volumes about it

4 Replies

Hello Matt, I decided to reply this time I read your article. When my son first spoke to me about his condition, he asked me if I knew what torticolitis was (I think I have spelt it wrong). I knew what that was. When he asked me if I knew what dystonia was I said I knew. When I had spoken about his condition to some friends of mine, they had never heard of it. The more I spoke about it, the more surprised I became. Over the past few years it still is not widely known about.

Do you mind saying which hospital you are at? My son went to the hospital near the well known children's hospital in London.

Keep on with the work you are doing and keep going strong.


Thank you, Matt, for starting this community. It's very helpful to be able to share things with fellow sufferers. I'm sure it will grow and grow.


Hi mat, id love to involved but unsure if my situation fits here. Please read my reply today to someone else on this forum-my memory of were i wrote it is shocking sorry.

Because of the uniqueness of my situation no one knows what to expect of me or much less how to treat me!

Looking forward to hearing from you!

1 like

Hi Matt

Also new.Wrote this independently but word count restricted thought you may also find interesting regarding GPs not taught about disability their words and referring to specialists then when Thatcher came in late 60's hospital monitoring appts with antibiotics were no longer.

Here it is

What came first the chicken or the egg?

Could the genetic dopa responsive dystauna be the diagnosis Surely symptons should be at the heart of research from square one ? Genetic ?

Dystonia has raised its head.Just found you by accident as researching my coordination/movement symptons when stressed or have eaten daily which are possibly related to genetic conditions .

My late Mother had very severe multi infart dementia and I also have utis acute 3 weekly plus .I have had urological research x2 suspect the latest is of the kind wait and see …..Guinea pig ?

Also only Alzheimers /MID research was for an educational [ MA] dyspraxia and was same old test as for the dyspraxia

Also the MID research was for educational [ MA 2003 ]now 70 yrs – dyspraxia identified [ educational coordination & location dyslexia] and was same old test used for the alzheimers at National . Early research before Thatcher 1969 had found spina bifida occulta [ disability?] petit mal left untreated or taken further from chronic utis 3 weekly acute . As these started giving spinal spasm relieved with uti medication I had tried myself so desperate to stay independent .

By the way my late Mother also had had hyperparathyoidism/ hypercalcemia , low thyroid , couldn't speak or swallow yet also had polymyalgia rhematica possibly complications found out since the diagnosis of MID . They deliberately diagnosed too late to reverse or for assistance stopping research as I proposed this me and her.Social services not given as a result.

Also I had severe dysmmenhorea from early pubity – spasms - relieved by pill and low thyroid [ genetic]Now 70 yrs I still have utis acute 3 weekly plus .I have had urological research x2 .I suspect the latest 2014 Urology / spina bifida/multi infart dementia research is of the kind Wait and see. Is this why registrars record what you tell them then discharge with no investigation or treatment from the specialist or appropriate follow up that does not delay ? Is this why being blamed for being sent incompetently from pillar to post via admin using Choose & Book inappropriately . Guinea pig ?

Originally before Thatchers Cuts spina bifida occulta was implicated with me in my 20s and followed up after finding fatty liver, scarred kidneys petit mal , neurogenic bladder one ureter too many [ reflux] & incontinence partial .

The spinal spasms & spasicity after cardiac arrest relating to utis [ found via self medication & had expensive MRI privately due to no spinal ones in A&E – 20 useless visits - ] have not had symptons since steroid injections [ quick fix?]

Referral via NHS to tertiary sector has been blocked by admin not understanding criteria hospital and Drs with a conflict of interest instead of Hippocratic oath .However the Prof whose research was spina bifida and uro and neuro refused referral to tertiary sector and on moving home [ as suspect hospital contracted into had done a quick fix re Disability provision. As gave hospital scripts .

This is good but we are no further forwarded diagnostically .Massaging poor management of inappropriate funding by LA s. meaning can’t access social services am legally qualified to have

I have also found my preventative medication interaction causing bad side effects especially statins Had Raynauds diagnosed which went when stopped a particular statin.

This year the heart failure symptons [ still ignored] been affecting movement since physically targeted out of employment enduring No Antibiotic policy in 1996 - Dukes Analysis has been found by me and have been proved to have pulmonary hypertension on Reveal device implant when . This was on fitting yet another holter monitor implant not showing these symptons on directed tests

Daughter of a pharmacist.

It still has not been not connected or coordinated the fainting daily on eating & confusion poor coordination spasm till next day as supposedly all heart tests OK.Yet it became fatal? heart attack 12yrs ago revived with an angioplasty, yet still the the classic heart failure symptons are ignored .