Home Lack of help leaves Chesterfield couple frustrated after APD diagnosis

Lack of help leaves Chesterfield couple frustrated after APD diagnosis

Press Release: February 03, 2010

After a hearing test and referral to the hospital, Chelsea was given hearing aids and we thought these would help Chelseas husband Simon explains: But after further tests we were told she had APD, something wed never heard of and we were sent away with confusing leaflets and left to cope with it on our own.

Auditory Processing Disorder is not a problem with the ears in hearing sounds, but a difficulty with the brain in processing them, making it difficult for sufferers to understand speech. There is a lot that isnt known about the condition.

Every aspect of Chelseas life is affected. Noisy places are terrible for her and she says that everything feels jumbled up in her head. She struggles to understand instructions - and as she has a physical disability too - I have had to become her full time carer and point of contact for all communication, Simon said.

With a 10 month old baby boy, the couple are now worried that their young son may be affected by the condition, which is thought may be passed on genetically. Simon explains: Our son has had initial hearing tests and we now have to wait until he is over a year old for further tests. This is extremely worrying for us as parents, especially as we are realising how little is known about APD and how there is nothing that can be done

Simon continues: The most frustrating thing for me has been the lack of support and knowledge, even when I try to talk to the consultants at the hospital they dont seem to know how to help. I try to research as much as I can on the internet and this is how I came across the charity Deafness Research UK who sent me some useful information.

Vivienne Michael, Chief Executive of Deafness Research UK, said: Deafness Research UK funds research into Auditory Processing Disorders and we are currently funding a project to develop more accurate diagnostic tests. While the charity is passionate about research and finding new cures and treatments, we are also here to offer help, support, information and practical guidance for people faced with the challenges of hearing disorders. Anyone with any questions or concerns regarding APD can contact our freephone information line on 0808 808 2222 or visit our website where we have an APD fact sheet.

Deafness Research UK is the country's only charity dedicated to finding new cures, treatments and technologies for the deaf, hard of hearing and other hearing impaired people including tinnitus sufferers. For information on research into deafness and other hearing conditions, log on to the website, www.deafnessresearch.org.uk

About Deafness Research UK

Deafness Research UK is the countrys only charity dedicated to finding new cures, treatments and technologies for deaf, hard of hearing and other hearing impaired people.
The charity supports high quality medical research into the prevention, diagnosis and treatment of all forms of hearing impairment including tinnitus.
The Deafness Research UK Information Service provides free information and advice based on the latest scientific evidence and informed by leading experts. The Information Service can be contacted on Freephone 0808 808 2222
For more information on research into deafness, tinnitus and other hearing conditions, log on to the website at www.deafnessresearch.org.uk where you can access a wide range of information. Alternatively you can e-mail Deafness Research UK at info@deafnessresearch.org.uk
One in seven people in the UK almost nine million people - suffer hearing loss.
Deafness Research UK was founded in 1985 by Lord (Jack) and Lady Ashley of Stoke.
In January 2008, Action for Tinnitus Research (ATR) was linked with Deafness Research UK under a uniting direction order under section 96(6) of the Charities Act 1993.

Scientific & medical advances

Since its creation in 1985, Deafness Research UK has awarded over £10 million in research grants to secure radical improvements in the prevention, diagnosis and treatment of all forms of hearing impairment.
The advances we have been responsible for include:
the development of the Otoacoustic Emissions (OAE) test to enable doctors to identify hearing impaired babies at birth.
research into more effective cochlear implant devices and services, including assessment, fitting and rehabilitation procedures for children.
improvements in signal processing for digital hearing aids in order to help improve speech discrimination and understanding, particularly in noisy environments
the isolation of genes responsible for many forms of inherited deafness including the most important breakthrough that mutations in the Connexin-26 gene cause a significant proportion of congenital and childhood deafness
research into preventing or repairing inner ear damage, including funding researchers who were the first to report that hair cells in the mammalian balance system can regenerate
the discovery that an overproduction of the neurotransmitter glutamate can be linked to tinnitus, a finding which could lead to new drug treatments for the condition.

Further Deafness Research UK achievements can be found at www.deafnessresearch.org.uk and following the achievements button. A direct link follows here:

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REF: DR-UK0182 Chelsea Briggs case study


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