A Sample letter to NIH

[Guest guest]

Below is a sample of a letter that a member from this site gave to her doctor to put on his letterhead. She thought that it might be a help to anyone trying to apply. She was able to get hers sent off a couple of days ago, so the ball is rolling--lets keep it rolling!

So far I have heard from only about 5 people who say they are going to apply. Come on--we need at least 50. This is an important opportunity. WE HAVE THEIR INTEREST and we don't want to lose it!! If we sent in 50 applications, there is no way they could ignore this problem.

Email me for all the info regarding what you need to do. My email is k.howe@.... I would be happy to help you in any way needed if you do it. I even live somewhat close to Bethesda if you need a quiet place to stay!! Please just do it--this is important!!

Kathy Howe

TO: NIH Undiagnosed Diseases Program

10 Center Drive - MSC 1951

Building 10, Room 10C103

Bethesda MD 20892-1851

RE: patient name / Soft Sound Sensitivity

Date: September 4, 2008

To Whom It May Concern,

My patient patient name presents with disturbing and unusual symptoms which do not lessen with prescription drug therapy nor psychological counseling. I find this case to be extremely unusual and do not find myself in a position to delve into the cause or the cure for this. I feel she would be an excellent and motivated candidate for any study which might result in an alleviation of her difficulty which impacts every part of life. It has affected her interpersonal relationships and her work/career.

I am the primary care physician for patient name. I will provide ongoing consultation to the NIH team and will provide any appropriate follow-up care for this patient.

patient name tells me she has been suffering with this condition since approximately age 8 when it suddenly became impossible to tolerate certain sounds. These sounds create a rage and panic sensation: classic "fight or flight" which feels barely controllable. Only by her removing herself from the stimulus or by acting out in a semi-violent manner stops the rapid heartbeat, adrenaline flushing and emotive feelings of rage and panic. Breathing sounds, mouth noises and footsteps are her main sources of turmoil, though children playing, voices in the distance, power equipment and a myriad of other sounds affect her the same way. The sounds which bring on the feelings do have one thing in common: they are sounds which are almost all background sounds: unnoticeable by most but patient name is unable to escape hearing them. The issues she has seem to be growing: she has developed more and more triggers over the years and continues to do so. She is no longer employed in her 25-year career of Financial Services Management as of 3 years ago.

patient name currently takes Clonazepam (Klonopin) .5 mg 2X day and 20 milligrams Fluoxetine (Prozac) 1X day. She has been on this regimen since September 1992 which was three years after giving up alcohol. This drug treatment has lessened the intensity of the feelings of uncontrollability - but has not affected the feelings of rage and panic. She is otherwise in excellent physical health. She presented to me after finding information on the internet: others suffer from this same condition. This appears to be a physical issue: not psychological.

My office address is: ­­­­______________________________email is ________________________

patient name address is:

She has seen the following doctors/practitioners to try to find answers to her problem.

Dates are approximate:

1988 - 1999 doctor name and address (psychology)

1992 - 1999 doctor name and address (psychopharmacology)

1999 doctor name and address (breath and body work)2003 - 2007 doctor name and address (Neurofeedback )