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Disability Experiences

Disability Specific: Vestibular Disorders

Includes Dizziness, Inner Ear Disorders and Meniere's Syndrome.

Disability Experiences provides a place for you to express information about yourself, your experiences, stories, poetry, art, music, dance, advice or other creative writing. This collection of writings and websites have been submitted by our community or link to websites that share the personal disability experiences of people with disabilities. This section offers individuals a chance to experience other's ideas and thoughts. Also, if you wish to submit your own writing or website, please click on our Personal Experiences Form or Share Your Knowledge.


New Horizons Un-limited is not endorsing and assumes no responsibility in guaranteeing the products, services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. Evaluate the information, analyze your unique circumstances, use your best judgment and make your own decisions when using the information. Before making any change, consult your health care professional.


New Horizons Un-Limited Publications


Dizziness and Me is an article written by Phil from Washington and submitted to New Horizons Un-Limited in which he has shared his personal, 33 year experience with a vestibular disorder, an inner ear disorder that causes severe dizziness and nausea. Phil's experience with misdiagnoses and dizziness are unfortunately common with inner ear diseases. Through Phil's experience, we can all begin to understand the complications brought to daily living with vestibular disorders. Thank you to Phil for sharing his experiences and these helpful suggestions on what people with vestibular disorders need from their health professionals and rehabilitation.


Europe


Philippa’s Story: Living with Superior Semicircular Canal Dehiscence Syndrome from Eurodis.org - Rare Diseases Europe "Philippa has superior semicircular canal dehiscence syndrome (SCDS), a rare balance disorder. SCDS is a developmental anomaly that occurs during the first three years of life and is thought to be caused by a lack of bone growth in the uppermost balance canal of the inner ear, which can cause a tiny hole to develop. ... Sound or pressure can trigger abnormal activation of the balance canals in the ear, which in turn leads to a wide range of distressing and disabling symptoms." The very difficult reality for many people with vestibular syndromes is that doctors misdiagnose or miss them. Read more of Philippa's story to find solutions and rehabilitate from surgery from SCDS and all its disabling effects at the link above. Philippa's story adds that this is not as rare as once thought but, "It has been estimated that 10% of chronic dizzy patients could have SCDS, but many of these cases are possibly being overlooked."


Country Listings


United Kingdom

New Sign Labyrinthitis.org.uk is a website developed by two ladies in the United Kingdom who suffer from what they call "uncompensated labyrinthitis". They have developed this website to provide information and support for other people who are experiencing ongoing vestibular disorders. As they say on their home page, the site is written by patients for patients. It is a very good website to help people suffering from inner ear dizziness to learn that they are not alone in their suffering, in being misunderstood by their family and friends, and in having difficulty finding a physician that can tell them what is really wrong. This website includes information about how the inner ear and balance systems work, a list of some of the symptoms a person might experience, the process of getting a diagnosis and some of the tests that might be used, information about VRT (vestibular rehabilitation therapy), and a very good section on coping with the disease and the misunderstanding of family and friends. This website includes stories of their experiences with dizziness written by the two women who developed this website. The stories show that finding help and making progress overcoming inner ear disorders is slow but there is hope. The website also has links to websites with information about vestibular disorders and support groups and a list of three books about living with vestibular disorders. For more information, send e-mail to iliaandemma@hotmail.com


For more on the topic of Vestibular Disorders:
If you have questions or ideas, information and solutions that you would like to share with us, you may contact us by e-mail at: horizons@new-horizons.org or to use our NHU E-Mail Form or NHU Community Forum, click on the links below.
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[Updated August 19, 2015]
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