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Gina Lynn's Waardenburg's Syndrome Home Page
Hello there! My name is Gina Lynn, and I was diagnosed with Waardenburg's Syndrome (WS) in November of 2000. I am one of the lucky ones who has experienced no hearing loss. However, I do have Endolymphatic Hydrops (ELH), which is one of many possible flags for WS. Other symptoms of ELH may consist of any combination of: dizziness/vertigo, nausea, tinnitis (ringing in ears), extreme sensitivity to loud noises/bright lights/rapid air pressure changes/rapid increases in atmospheric moisture, depression, panic/anxiety attacks, poor depth perception (or spacial orientation), pain/fullness/popping/moisture/itching in ears, seeing things moving at the corners of the eyes that aren't really there, mental confusion/fogginess, a feeling that things are somehow "unreal or dreamlike", eyestrain, difficulties with speech and concentration, headaches, feeling off-balance or that the ground is moving or tilting, severe muscle pains in legs/ankles/feet, etc.
Flags unique to Waardenburg's Syndrome may consist of:
hearing loss (sometimes, not always), heterochromia (Eextremely pale blue eyes or eye colors that don't match), brilliant blue eyes, albinism (unusual pigmentation of hair, skin, and/or eyes), premature graying of hair by age 30, white forelocks, hair loss, dystopia canthorum (prominent, broad nasal root/bridge), widely-spaced inside corners of eyes, eyebrows that grow together, vitiligo (depigmentation/white patches of skin), severe PMS- or peri-menopausal-like symptoms, contracture (difficulty with completely straightening joints), spinal defects, elevation of the scapula, and cleft lip and palate.
The four known types of Waardenburg syndrome are distinguished by their physical characteristics and sometimes by their genetic cause. Types I and II have very similar features, although people with type I almost always have eyes that appear widely spaced and people with type II do not. In addition, hearing loss occurs more often in people with type II than in those with type I. Type III (sometimes called Klein-Waardenburg syndrome) includes abnormalities of the upper limbs in addition to hearing loss and changes in pigmentation. Type IV (also known as Waardenburg-Shah syndrome) has signs and symptoms of both Waardenburg syndrome and Hirschsprung disease, an intestinal disorder that causes severe constipation or blockage of the intestine.
II am under the care of Dr. Black (an Otology and Neuro-Otology specialist or balance/hearing) and I have been on (and sometimes off) the Hydrops Diet since my diagnosis. (I believe that many people with ELH can improve their symptoms by following this diet.) I would be happy to discuss my WS and/or ELH experiences with anyone interested and would love to hear yours -- just leave me an e-mail and/or post on one of my NEW Message Boards (see links below).
This is a support group for this rare genetic condition. A forum for people to talk to other people who have Waardenburg's or have family members with Waardenburg's. Also, more than welcome are those with Meneire's, who, unfortunately, also have to deal with ELH everyday. The purpose of my web page is for fellow Waardenburg and ELH sufferers to share information and give emotional support via e-mail and/or Message Boards.
* Check out "Vestibular Links from VEDA". It contains many other links of possible interest (below). One could spend all day going through them!
* Jill is administrator of The New Dizzy Lounge Message Boards. A fabulous place to discuss vestibular disorders of all kinds.
(links below)
I'm looking forward to hearing from you!
-Gina Lynn
P.S.: Here is my e-mail address:
waardenburg@fastmail.fm
P.S.S.: In case you're wondering ... the above photo is our American Bulldog female Jasmine! If you'd like to see more pictures of our ABs, go to our link at:
www.coldcreekabs.com
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I AM NOT A DOCTOR. The only purpose of this webpage is for sharing of information and support.
The counter below shows only since 12/28/2005.
Vestibular Links from VEDA
The New Dizzy Lounge Message Boards
ezboard Waardenberg Community Messageboard
My WS Yahoo-Groups Site
Boys Town National Research Hospital
Send E-Mail to: waardenburg@fastmail.fm
Copyright © 2007 Gina Lynn. All Rights Reserved