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</form>Text Content
MISOPHONIA UK
* Home page
* About us
* For sufferers
* For family & friends
* For doctors
* Get involved!
* Publications
* More info
* Shop
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incorporating
● UK MISOPHONIA (SOUND SENSITIVITY) SUPPORT GROUP
● MISOPHONIA RESEARCH FOUNDATION
and
● MISOFONIA WORLDWIDE
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TOP PAGES:
●Tell us your worst trigger!
● In a hurry, but want to know more? Download a leaflet!
● Read about misophonia in your language! Spanish NEW!
● The Misophonia Activation Scale, a clinical tool.
NEW!
BBC Radio 4 feature on misophonia
Check out the BBC Radio 4 feature on misophonia, aired on 6 August 2013 during
their show "Word of Mouth" . Chris Ledgard meets people with a condition that
isn't that widely acknowledged by many General Practitioners: misophonia. People
who have it suffer extreme adverse reactions to sounds created by other human
beings; frequently breathing or eating sounds. Chris asks about the scientific
research that is being undertaken, both in the UK and abroad. here.
Wellcome Centre fMRI study
Dr Sukhbinder Kumar and his team at the Wellcome Centre for Neuroimaging have
now received enough questionnaires to be able to proceed with the fMRI study. He
is very grateful for the level of interest shown! Those being invited to
participate will be contacted in due course.
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● Kelly Ripa Diagnoses Herself With Mysterious Neurological Disorder.
● NBC's Today programme segment
● Irish Times article "I feel such revulsion, I want to scream"
● New York Times articles 1 and 2 on misophonia
● Check out this video.
● Misophonia is now listed on the UK Database of Uncertainties about the Effects
of Treatments (DUETs) on the NHS Evidence website.
● Misophonia UK is proud to announce that we have just joined the James Lind
Alliance - working together to secure greater patient involvement in clinical
research.
● Man shot dead "for complaining about loud eating" during showing of Black Swan
● Check out the new US website: Misophonia
● Film-maker looking for volunteers for documentary about misophonia. Click here
for more.
● We are now listed on the leading UK health website
Patient UK. Many thanks are due to Dr Tim Kenny and his review team.
● FREE! self-hypnosis sound file and helpful tips in Dealing with misophonia.
● New autism drug “dampens sensitivity to loud noises.”
● Play white noise on any computer with internet access, download a free
60-minute thunderstorm soundfile, or buy a colour noise player app for your
i-Pod for 59p.
COMING SOON:
● Download a coping skills starter pack
● Misophonia and the Equality Act 2010: what are your rights?
● Misophonia Matters, the inaugural issue!
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Thought for the day
Don't walk behind me; I may not lead. Don't walk in front of me; I may not
follow. Just walk beside me and be my friend.
Albert Camus
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Wednesday, January 24, 2024
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Welcome to the UK's first comprehensive misophonia internet resource!
Misophonia UK campaigns for greater recognition of this medical condition
amongst the healthcare communities, people with misophonia themselves, and the
public at large.
We run UK Misophonia (Sound Sensitivity) Support Group, and Misophonia Research
Foundation, which is dedicated to finding out about the causes of misophonia and
ways to treat it, and to clarifying how many people in the UK have the disorder.
Misofonia Worldwide is providing information about misophonia in a growing
number of languages. Download a leaflet about misophonia in your mother tongue
today!
How can we help?
● If you have, or think you have, misophonia, click here.
● If you're a doctor or health professional, click here.
● If you're the family member, friend or colleague of someone with misophonia,
click here.
Perhaps you can help us! If you'd like to join in, find out how by clicking
here.
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WHAT IS MISOPHONIA?
Misophonia, also known as selective sound sensitivity syndrome, is a
newly-diagnosed neuro-otological disorder that affects children and adults.
Sufferers can feel immediate and intense rage at others’ eating and breathing
sounds, about which they become hyper-aware and obsessed, sometimes with an
ability to recall trigger incidents years after the event. The condition often
sets off a “fight or flight” panic reaction in the sufferer and has been
responsible for ruining relationships, breaking up families and leaving those
most acutely affected suicidal.
People understandably do not like being told they are noisy eaters and
breathers, and often react with hurt or ridicule, and certainly a lack of
compassion. They may make the noise deliberately more often and more loudly to
taunt the sufferer. Even normally caring parents will tell a child to simply
“grow out of it.” Children are particularly vulnerable, both as sufferers of
the condition and as victims of a broken home. [If you are the friend or family
member of a sufferer, please click here.]
Some people with misophonia have lost their employment, and even become
unemployable, as a result of their intolerance of colleagues.
See our list of FAQs.
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WHY MISOPHONIA DESERVES GREATER RECOGNITION
Many people have sounds they don't like, such as chalk screeching against a
blackboard or noisy eating in the cinema. But clinical misophonia is different.
It's a serious progressive illness which has wrecked lives and destroyed
relationships, particularly with sufferers’ nearest and dearest, leading to
estrangement and even break-up. For this reason, we call misophonia “the Midas
disorder”.
The usual age of onset is in childhood. Misophonia hits children particularly
hard – at crucial stages in their education and development.
Triggers can multiply to such an extent that, in extreme cases, a sufferer is
rendered housebound and alone.
Misophonia used to be the "invisible" disorder. Patients were once not taken
seriously, or simply couldn’t be helped, by their doctors, But sufferers are now
mobilising in online communities. Misophonia is one of the first fully-fledged
diagnoses of the Internet age.
A common refrain is “I thought I was the only one in the world, until I
discovered my condition had a name. I'm so glad there are people out there who
understand what I am going through. My family certainly don't”. Misophonia can
be a uniquely isolating disorder. With greater public awareness, some of that
isolation can be addressed.
The fact is that misophonia is a syndrome. It has a known set of recognisable
symptoms. As is the case in many medical conditions, these may vary in intensity
from person to person.
It is likely to be widespread. However, not enough is currently known about its
aetiology (cause) or epidemiology (incidence and prevalence). See below.
Progress in research has been hindered by the fact that misophonia is a
multi-specialty disorder. It requires input from audiological physicians,
neurologists, psychiatrists and psychologists.
There is no known cure, although some practitioners have reported improvements
with particular treatments (Tinnitus Retraining Therapy (TRT), Cognitive
Behavioural Therapy (CBT), hypnosis, use of coloured noise, etc). These remain
of disputed efficacy.
Coping strategies (talking over what is an intensely personal condition with
those most affected, allowing the sufferer to avoid intensely problematic
situations such as family mealtimes, masking problem sounds with ambient noise
or music, etc) will become more effective with third-party understanding and
compliance.
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Our campaigns
● To foster greater recognition in the medical and research communities
● To raise funds for research into the epidemiology (incidence and prevalence)
and aetiology (causes) of misophonia.
● To encourage more media coverage of the condition
● To stimulate greater public awareness
● To secure funding for a telephone helpline - MIDAS (Misophonia Disorder Active
Support)
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Current initiatives
● Publishing a list of current therapies and coping strategies. Click here.
● Developing a list of recognised misophonia consultants. Currently in
preparation.
● Publishing Misophonia Matters – our occasional newsletter - incorporating a
research update. For further details, click here.
● Creating an awareness ribbon for misophonia. Ribbon brooches will be available
from this link.
● An awareness day for misophonia in the UK – the first Monday in May – which
will be known as “Misophonia Monday”.
● Identification of celebrity sufferers (only with their consent!)
●The institution of a bi-annual international conference on misophonia
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HOW COMMON IS MISOPHONIA?
Misophonia UK is not aware of any reliable statistics on the full extent of the
prevalence of misophonia which is why Misophonia Research Trust intends to
commission independent professional surveys. What we can say is that the UK
Misophonia Support Group currently has around 220 members while Dr Marsha
Johnson’s US-based Yahoo 4S group has over 1,200 members (some are members of
both groups). This site currently records around 90 hits a day.
Coelho, Sanchez and Tyler, of the Department of Otolaryngology at University of
São Paulo Medical School, found that, from a sample of 506 schoolchildren aged 5
to 12, from 15 different schools, some 9% had phonophobia.
The Royal National Institute for Deaf People make the following estimate: most
people have suffered from tinnitus at some time and about 40% of those also have
hyperacusis or misophonia.
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In their own words
Hear misophonia sufferers' experiences in their own words. Click here.
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Donating to Misophonia UK
Misophonia UK operates entirely through public donations. We currently receive
no government funding. If you wish to make a donation of any amount, large or
small, please click here.
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Institutional status
Misophonia UK is an unincorporated not-for-profit organisation with wholly
charitable objectives. We will shortly be seeking incorporation as a community
interest company in the jurisdiction of England and Wales.
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Homepage | About us | For sufferers | For family & friends | For doctors | Get
involved! | Publications | More info | Shop
Contact us | Our policies | Your privacy | Sitemap
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© 2012 Misophonia UK. All rights reserved. Except where stated, no part of this
website may be reproduced without the explicit consent of the copyright owner.
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