Re: Dr. Carmen Brewer at NIH

[Guest guest]

(shrug) Guess I better figure out what to say.

= M-F.

----- Original Message -----

From: kim

>I say we all just send her our own e-mail seeking help and adding the doctor one if we have that…

[Guest guest]

Hi Multi-Facets... and everyone,This is the letter I sent. Feel free to copy which ever bits you want. It would probably be good if you personalise it in some way.(I hope she isn't passionate about knitting!)CheersIngrid.brewerc@...Dear Dr. Carmen Brewer,I'm writing to try to attract some research interest in an undiagnosed, rare and distressing disorder, which I have suffered with for the past 36 years.My disorder is an intolerance to certain sounds. My main problem is with the sound of other people eating, although I am also sensitive to other noises including the sounds of breathing, snoring, tapping computer keyboards, repetitive sniffing, slurping, picking, and recently, knitting needles clicking. I don't have a problem with any noises that I make.I've learned that there are similarities with the condition called hyperacusis but there are significant differences too:-- my symptoms started suddenly at age 11, without any external cause, and I have had experienced them daily, ever since.- I am NOT intolerant of loud noises, I enjoy loud music and many noisy situations, I play in a very loud rock band.- my hearing is excellent.- with age, more sounds are triggering my distressing responses and, I see no alternative to increasing isolation due to this condition.There is an internet support group with 800 members who suffer from the same bizarre symptoms; recently our members have applied to the Undiagnosed Diseases Program at the NIH. The first of our group to apply, has received a rejection letter, and suggests we contact you directly.As part of my recent application to the Undiagnosed Diseases Program I have (hard copies of ) referral letters from my primary health-care provider and from a psychologist, which I can forward to you if appropriate.This (initial) rejection from the Undiagnosed Diseases Program has been a huge disappointment as we desperately seek some medical study which can be referenced by health care providers and the prospect of an effective treatment or cure.Sincerely,(shrug) Guess I better figure out what to say. = M-F.----- Original Message -----From: kim>I say we all just send her our own e-mail seeking help and adding the doctor one if we have that…