Kennedy's Disease Association

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The KDA's mission is to inform, support, educate, fund research, and find a cure for Kennedy's Disease 

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Kennedy's Disease Chat Transcript 12-14-02

Topic:  Questionnaire results (Symptoms)

Host: Susanne Waite

 

Chat Participants:

susannew 
chuck 
fergi 
jean 
billeric 
johnm 
butch 
jean 
don48312 
mikeg 
murf 
john-c 
patrick


BEGIN CHAT

susannew -- City sidewalks, busy sidewalks...
susannew -- Hi Butch!
fergi -- {welcome fergi}
butch -- Good morning Susabbe, Here is wishing you and Terry a very merry
xmas and a happy new year.
susannew -- Good morning Fergi!
butch -- Should be Susanne--sorry.
fergi -- good afternoon in Spain
susannew -- Season's Greetings to all!
butch -- Susanne--please check into the previous chats because the chat
for Sept 8th 2001 is not listed.
susannew -- On the KDA Web site?
butch -- Yeds on the KDA site.
butch -- Just can't type this morning. yeds is yes.
susannew -- I'll let Terry know... That one must have slipped by us.
susannew -- Is there snow in Pennsylvania today?
butch -- Some snow is predicted but mostly we are getting rain in southern PA.
susannew -- Fergi, where are you from?
susannew -- Ok, I'm blonde - I see you stated Spain below.
fergi -- I am from Madrid (Spain)
susannew -- The holidays have us running so hard lately - between family
and friends, but also for my clients! Sent out 700 Holiday cards - of
course purchased from the KDA!
butch -- Good afternoon in sunny Spain. You folks always have alot of sun.
fergi -- Today is not sunny. cloudy and cold over Madrid. 5ª C temperature
and rainy
murf -- {welcome murf}
susannew -- Have you looked at the new site design?
www.kennedysdisease.org . What do you think?
butch -- It is very professional looking. But, of course the old one
looked good to me. You don't know just how good it looks when you are
looking for info and the KDA site.
murf -- I like the new site design
susannew -- THanks Butch. I know the information there has helped many due
to the emails we've received telling us so. I wish it was there when we
were first diagnosed.
susannew -- THanks Murray.
jean -- {welcome jean}
susannew -- Good morning Murray!
susannew -- Good morning Jean!
murf -- Good morning
jean -- Hallo everyone, I'm Jean Lavalle from cold Belgium/Europe (0
degres centigrade / no snow till today)
susannew -- Cloudy here in So Cal but with a bit of sun breaking
through... we're a cold 60's at least. :)
murf -- After a week of rain, the sun is finally out in Texas.
susannew -- Today's chat is to discuss the questionnaire that has been
spread over the last year and revealing some of the findings. I will be
listing a bunch of information regarding the symptoms and signs of KD and
the responses given on the questionnaire. I've only got up to 150
signs/symptoms tallied so far (there were 218.) I will continue to work on
tallying over Christmas week and New Years Weekend. We'd really like to
complete the questionnaire and give everyone the information.
susannew -- Please note that the information still needs to be
doublechecked - but I would judge it to be 80% accurate at this time.
susannew -- Section C of the questionnaire...
butch -- Murf--How is Karol doing?
murf -- Karol's ok, she's on oxygen every night and should be on it during
the day.
susannew -- We got Karol's card and letter - tell her she is a kick and to
get well!
murf -- I'll tell her when she gets up
butch -- I knew they couldn't keep that lady down.
don48312 -- {welcome don48312}
don48312 -- MERRY XMAS ALL, HELLO FROM SUNNY FLORIDA
don48312 -- no snow here
butch -- SEMPER FI Don. Hope you are doing well. I have been painting the
marine corps seal which is cast in cement. They make a great garden stone.
don48312 -- "Semper Fi" butch
don48312 -- doing well here butch
john-c. -- A Blessed Christmas & a Healthy New Tear to all from Maryland.
john-c. -- ....and a healthy New Year also
butch -- John--Hope you are doing well. How are you getting around in this
icy and snowy conditioins. I guess that will be another Coakley's
letter--to come.
john-c. -- Butch.....you're in it this time. It's on the web today.
john-c. -- Perfect Don. LOL Glad to "see" all of you this AM
murf -- Merry Xmas to ya'll from Texas
murf -- are you going to publish this on the web site?
billeric -- {welcome billeric}
john-c. -- {welcome john-c.}
patrick -- {welcome patrick}
susannew -- 7 out of 37 (19%)reported abdomen swollen/enlarged.
susannew -- 20 out of 37 (54%) reported abdominal weakness
jean -- Abdominal weakness? The other 17 has no weakness or have they not answered this question?
susannew -- I am reporting what individuals marked as having
symptoms/signs on the questionnaire.
susannew -- 3 out of 37 (8%) reported food allergies
susannew -- 8 out of 37 (22%) reported allergic to plants
susannew -- 5 out of 37 (14%) reported allergies to animals
susannew -- 7 out of 37 (19%) reported acne at some point in their life
susannew -- 5 out of 37 (14%) reported allergic sensitivity has increased
susannew -- 7 out of 37 (19%) reported allergy to other
susannew -- 7 out of 27 (19%) reported ankles sprained more often than expected
susannew -- 13 out of 37 (35%) reported ankle swelling
susannew -- 21 out of 37 (57%) reported arm weakness
susannew -- 18 out of 37 (49%) reported arm cramps/spasms (from elbow to
top of arm)
susannew -- Sorry - that was from wrist to elbow
susannew -- 10 out of 37 (27%) reported arms cramps or spasms from wrist
to top of elbow
susannew -- Blonde moment - that was 18 reported out of 37 (49%) cramps
from elbow to top of arm, - no more trying to read the chat and answer
questions for now - will just be giving the information throughout - go
ahead and chat though.
susannew -- 5 out of 37 (14%) reported asphyxiated (passed out/fainted) at
some point in their life
susannew -- 0 reported aspiration pneumonia in their lifetie (However, if
I may make a side comment - we have known of 5 individuals in the past 2
years of the KDA's operation that have passed away due to aspiration
pneumonia) Apiration pneumonia is when food gets down the wrong pipe and
enters the lungs.
susannew -- 7 out of 37 (19%) reported back muscles cramps/spasms
susannew -- 17 out of 37 (46%) reported back muscle weakness
susannew -- 24 out of 37 (65%) reported back stamina loss
don48312 -- susanne, what is back stamina loss?
susannew -- 23 out of 37 (62%) reported balance problems or unsteadiness
susannew -- 10 out of 37 (27%) reported bladder control difficulty
susannew -- 4 out of 37 (11%) reported bleeding gums
susannew -- 7 out of 37 (19%) reported bloating
susannew -- 0 reported blood in urine
susannew -- 5 out of 37 (14%) reported body swelling in other areas
susannew -- 7 out of 37 (19%) reported bothered by cigarette smoke
susannew -- 9 out of 37 (24%) reported bothered by diesel/gas fumes
susannew -- 9 out of 37 (24%) reported breathing deeply only with difficulty
susannew -- 11 out of 37 (30%) reporte foul smelling breath
susannew -- 13 out of 37 (30%) report breath shortness
susannew -- 15 out of 37 (41%) report breathing difficult after swallowing
food or liquid
susannew -- 15 out of 37 (41%) report breathing difficulties when have
colds/flu
susannew -- 14 out of 37 (38%) report breathing difficulties in general
susannew -- 5 out of 37 (14%) report bruise easily
susannew -- 15 out of 37 (41%) report calf muscles hypertrophied
(enlarged/thickened)
susannew -- 25 out of 37 (68%) report calves cramp and spasm
susannew -- 12 out of 37 (32%) report calves weakness
susannew -- 0 reported castrated in past (improved symptoms)
john-c. -- Now that would be a Castratophy!
patrick -- Great news on the research front: more testosterone doesn't help KDers, and less testosterone doesn't help, but there are indications that castration may help. My question - who wants to volunteer for the next study?
jean -- patrick - i propose my dog
susannew -- 7 out of 37 (19%) reported chest congestion
susannew -- 8 out of 37 (22%) reported chest pain
susannew -- 9 out of 37 (24%) report chest pressure/like rubber band
around the chest
susannew -- 22 out of 37 (60%) report choking on food
susannew -- 16 out of 37 (43%) report choking (dry drowning) airway
passage closing/laryngeal spasm
susannew -- 11 out of 37 (28%) report chocking/dry drowning worse during
allergy or pollen seasons
susannew -- 23 out of 37 (62%) report clearing of throat to be
difficult/more frequent
susannew -- 18 out of 37 (49%) report climbing stairs/ladder to be
difficult
don48312 -- ladder, u gotta be kidding!!!!!
susannew -- Yes the ladder/stairs one seems to be low % based on all those we've talked with over the last 2-3 years!
johnm -- I'm with you Don.
billeric -- Me too, Don
murf -- Ladder - one stap and that takes 1/2 hour
susannew -- 5 out of 37 (14%) report colds or flu seem to come more frequently
susannew -- 11 out of 37 (30%) report conceiving children difficult
susannew -- 8 out of 37 (22%) report constipation
susannew -- 14 out of 37 (38%) report coug recurrently
susannew -- Phew - that's 50 symptoms down!
susannew -- 7 out of 37 (19%) report coughing up thick saliva or phlegm
susannew -- 6 out of 37 (16%) report Need to clear throat some mornings
susannew -- 8 out of 37 (22%) report cuts and wounds slow to heal
susannew -- 6 out of 37 (16%) report dental abcess or other oral problem
susannew -- 19 out of 37 (51%) report diarrhea (passage of stools of
decreased form, watery) at some point (need to look at detail responses to
know when)
susannew -- 12 out of 37 (32%) report dizziness or vertigo
susannew -- 3 out of 37 (8%) report drooling
butch -- Hey I only drool when my wife isn't looking. Of course that means that I am "looking".
don48312 -- lol butch
john-c. -- Ditto, Don. LOL
susannew -- 10 out of 37 (27%) report ear problems
susannew -- 4 out of 37 (11%) report ears resonating or echoing
susannew -- 1 out of 37 (3%) report ears ringing/tinitus
susannew -- 7 out of 37 (19%) report excessive oil production (hair,
mucus, tallow glands, etc.)
susannew -- 13 out of 37 (35%) report eye twitching
susannew -- 7 out of 37 (19%) report eye glass prescription changing frequently
susannew -- 6 out of 37 (16%) report eyes burning
susannew -- 14 out of 37 (37%) report eyes dry
susannew -- 14 out of 37 (37%) report eyes itchy
susannew -- 20 out of 37 (54%) report eyes with black spots, floaters in vision
susannew -- 26 out of 37 (70%) report facial muscles twitchings, spasms,
fasciculations
susannew -- 25 out of 37 (68%) report facial weakness or slackness,
unsmiling appearance
susannew -- 28 out of 37 (76%) report falling or tripping easily
susannew -- 8 out of 37 (22%) report fingers stiff
susannew -- 0 reported food loss of interest!!!
susannew -- 16 out of 37 (43%) report genital itch (thankfully this
questionnaire is anonymous!)
susannew -- 16 out of 37 (43%) report getting up from floow or kneeling
position difficult
billeric -- Difficult is the under statement!
johnm -- DIFICULTY getting up from floor is an UNDERSTATMENT!!!!!
murf -- Johnm - I hear you!
chuck -- Yes Susanne, we find we must use the "belt" lift to get Charlie up from the ground or floor.
susannew -- I think the getting up from floor looked low also - but that's my opinion - not what the questionnaire came out to be!
susannew -- Again, it can be skewed due to a large span of age groups represented.
susannew -- 12 out of 37 (32%) report glands swollen (Neck armpits, groin)
susannew -- 13 out of 37 (35%) report gynecomastia/enlarged breasts
susannew -- 4 out of 37 (11%) report hair color changed abnormally
susannew -- 16 out of 37 (43%) reported hair loss
susannew -- 29 out of 37 (78%) report hand grip weakness
susannew -- 26 out of 37 (70%) report hand stamina reduced when writing or
doing other manual tasks
susannew -- 17 out of 37 (46%) reported hand tremor
susannew -- 10 out of 37 (27%) report headaches
susannew -- 3 out of 37 (8%) report hearing loss
susannew -- 6 out of 37 (16%) report heart palpitations
susannew -- 7 out of 37 (18%) report heart problems
susannew -- 10 out of 37 (27%) report heartbeats skipped or extra
susannew -- 10 out of 37 (27%) report hemorrhoids
susannew -- 5 out of 37 (14%) report hips bothered
susannew -- 4 out of 37 (11%) report hunger often or excessively
susannew -- 10 out of 37 (27%) report hypoglecemia
susannew -- Ok - that's as far as I got tallying symptoms.
fergi -- susannew- Who is the patient with more time with KD known (years
since was diagnosed)?. I ask this, because i think all us in KDA not more
than 12/15 years of evolution.
susannew -- Fergi: I would have to look that up - we'll let you know later
when I get to that part of the questionnaire
don48312 -- fergi, as KD was only discovered in late 1980's, cant have
been dx'd much earlier
jean -- To don48312: KD was discovered in the 60'. My uncle was
diagnosticated 1968. He died 1996
patrick -- Hi everyone. Happy holidays to everyone. Sorry I'm late but my
cat ate the alarm clock... :-)
don48312 -- hello john c, u have 1 minute left, lol
billeric -- {welcome billeric}
chuck -- {welcome chuck}
don48312 -- john, judy is still raving about the killer crab cake at
Gunnings
jeans -- {welcome jeans}
jeans -- hello all of us, i am jean from france
murf -- Karol is up now and says Hi to every one
john-c. -- Don & all: one of the best times was with you all . It is great
to put the faces with the names. Hi Karol.
murf -- Good morning Jeans - how was the TV interview?
jeans -- murf : I think you talk about interview of jean jacques last week
at the telethon ?
murf -- I was, I'm sorry I got you mixed up
jeans -- unfortunately, jean jacques could not speak about KD at the TV,
there was too many people !
jeans -- I did not come on this chat since a long time
don48312 -- judy & i are going to lunch with mike and paula goynes later
today
don48312 -- true john c and congrats on elevation to Director status
john-c. -- Thanks.
butch -- John--Thanks for stepping up and accepting the position of board
member. I know the existing board are glad for your help. They all work so
hard for us. THANKS BOARD MEMBERS.
murf -- Jeans - Tell everyone merry Xmas for us
jeans -- murf : thank you merry xmas for all of you.
mikeg -- {welcome mikeg}
john-c. -- Murray, how far are you from "the Big Easy"? and do you ever
get there?
murf -- John - I'm 25 miles west of down town Houston, I don't know were
the big easy is.
john-c. -- New Orleans........, not around the corner.
don48312 -- i was in new orleans 2 weeks ago for buccaneers football game
with saints
john-c. -- Don: drop me a line later about where you stayed, etc. Anyone
here familiar with New Orleans?
don48312 -- john-c, stayed n gulfport, ms, 1 1/2 hours away.
susannew -- John C: Murray is in the room - he's volunteered to scope out
a location in New Orleans (He lives in Houston) and he's volunteered to be
on the 2003 Conference and Symposium meeting committee
murf -- Susanne - have we decided when we'd like to meet?
don48312 -- i thought the convention was going to be in LA. what happened?
john-c. -- Susanne: that's a lot of numbers this AM.
susannew -- John: This was a lot of tallying and more so spreading - Once
again I have to thank those who helped us spread these questionnaires -
each questionnaire took at least 1 hour to spread (I know, I did a couple
myself!)
john-c. -- I fully understand the work.Great job with it!
don48312 -- i been adding them up, 693 so far
john-c. -- 37 of 37 (100%) reported liking to drink beer.
jeans -- susanne : jean jacques cannot be there today, but he ask me to
transmit his salutations
jeans -- the french telethon was a great success, beter than last year,
good news for the researchers
murf -- John - It's to early for me. I haven't been, to much work.
johnm -- {welcome johnm}
susannew -- I hope you are all paying attention - at the end there will be
a quiz - and the winner will win a brand new car!!!
billeric -- Were hanging on every word, Susanne!
butch -- Susanne- The car isn't being donated by Patrick is it?
patrick -- Susanne =- a question - are the 17% reporting loss of bladder
control and bad breath the same individuals that John's calculates drink
beer?
jeans -- susanne : jean jacques said there was about 14 answers in france
for the questionnary (the same than yours)
don48312 -- the discovery of the excess "CGA" repeats was discovered by Dr
Fischbeck in 1989.
jeans -- susanne: how many answers in US ?
susannew -- I don't have all the breakdowns of where all the answers came
from at this time - I've only tallied these 150 symptoms for this chat -
we still need to complete tallying the questionnaires in their entirety
and write a full report for everyone.
susannew -- Sorry Jean - I don't know at this time how many from France
versus the US... although I know the majority did come from the US>
john-c. -- Thanks, I did know that. My mind slipped on the ice.
susannew -- THis information is truly indicational and not definitive - a
group of 37 (while a decent size) cannot speak for an entire population
(we were hoping to have gotten more in so the numbers would have been
stronger indications). Also - this information I am supplying is not
segmented by age of individual reporting - if the majority of those who
are in this group of 37 are age 30 - then a lot of symptoms may not have
been reported yet and skew the numbers... also - had these 37 been 50%
women (which its not!) it would skew the numbers... for the full written
report we will attempt to segregate #'s as well as give full reporting as
this will be important to help interpret its meaning!
billeric -- Great news from Stanford U. They are pushing ahead on Stem
cell research.
butch -- One thing that I found out from the convention and all the
surveys taken--That KD'ers are a great bunch of people. Strong willed and
willing to step up to any challenge which may come our way. Keep the
faith. A cure is coming.
don48312 -- morning john m
john-c. -- I was at NIH for the day on Tues for the "slice & dice" & the
Elec measurements like you had, Butch. Everyone there in Kurt's Dep't. is
really interested in helping. Dr.Charlotte Sumner was there for the PM
portion.
don48312 -- slice and dice????
john-c. -- They take three samples of tissue & muscle: ankle, calf, &
thigh area & see how deteriorated they have become.
don48312 -- thanks john-c
butch -- John C--I hope the folks at NIH cn come to the convention next

year and possibly be prepared to get biopsys from us at the convention. I
know that Dr. Kennedy will not miss this convention.
patrick -- John- were you dissected with or without anesthesia?
john-c. -- What's anesthesia???
patrick -- A shot and a beer, or is it the other way around?
don48312 -- john-c, i think she is woman who claims to be Russian royalty
chuck -- John, it is closely related to your drink mixture at party this
summber....
chuck -- Sorry, I meant summer...
murf -- I'll donate some fat, I've got lots
john-c. -- Also measure electrical response times & check reflexes for
function. Butch: that's an interesting idea. They would have to do some
fancy logistical work, but they could get a large sample then.
patrick -- I think that Susanne should be praised for her efforts with
this study. A lot of work and a lot of numbers, but numbers are data, and
from data we get information, and from information we get hypotheses and
from those will soon come effective treatment for KD and finally we will
achieve a cure in the future.
murf -- Thanks Susanne we appreciate all your hard work!
butch -- I hope you all took notice at the convention that all the KD'ers
had a full head of hair. (Good looking too).
john-c. -- Patrick: When are you coming "east" to get that car?? LOL Don!
don48312 -- john-c, do u have pat's car?
john-c. -- Chuck.......is that you??
john-c. -- Why, I was looking for your "EMail name"....shame on me!
don48312 -- then how did pat get all those prizes home?????
patrick -- Still waiting for for those East side heathens to repent so the
weather improves...
patrick -- Prizes-what prizes? Those were/are Christmas presents!
chuck -- Yes, this is Charlie and Anna Lea. Maybe we on the East Coast
could drive Patrick's car to New Orleans next year. One thought - Butch
won't be allowed to be the co-pilot...
butch -- Hey Anna Lea- Sometimes if takes me a little longer but I will
get there.
patrick -- My sister volunteered to drive it back to Kansas for me - she
only wants first class air to D.C. and a credit card for her shopping
while back in civilization!
john-c. -- Good to be with you all this AM.....have to go and take over
for "mother-in-law duties".. By the way, I can't get up from the floor at
all. I'm in the process of writing a book titled "Look at what else I can
do while I'm down here"
don48312 -- cya john-c,your minute is up, lol
john-c. -- Stay Happy & Healthy.
john-c. -- {goodbye john-c.}
don48312 -- interesting susanne
murf -- Great Job Susanne!
patrick -- KD is called a spectrum disease because it affects people in so
manyways, with so many different intensities and rates of progression.
billeric -- wow Susanne, great job. It is appreciated.
johnm -- I've got to go also. Keep up the good work Susanne.
susannew -- When looking at the results thus far - many of the
signs/symptoms asked about may not come from KD in itself - but are simply
things everyone in a general population would experience. We can see how
difficult it would be for a researcher/doctor to pinpoint KD symptoms and
record them (as previously done by researchers), but also for a doctor to
actually take all the signs/symptoms and come up with a diagnoses! WOW!
johnm -- {goodbye johnm}
butch -- So long John, Hope mother-in-law is doing well. e-mail me when
you have some time to take a break.
susannew -- By John.
don48312 -- cya john-m
susannew -- THanks John M - See ya!
susannew -- I'm sorry I didn't get further along on this. I am very
impatient to have the results finalized.
patrick -- Great work, Susanne. I'm sure those who research KD will be
very interested in your landmark study. Hopefully they can winnow out some
valuable nuggets of information.
susannew -- I think I need to advertise for some local volunteers to come
over to our home and help tally the results - its a huge project!
don48312 -- isnt it john-c who has sick mother-in-law?
jean -- Susanne - Thank you very, for this study. Tomorrow, when i make
the summary of this chat and compare with my own dates I can better
appreciate your informations.
mikeg -- Susanne, what was the CAG repeat range? Does there seem to be a
correlation with any of the symptoms and a higher repeat count?
susannew -- Mikeg: I'm not sure about the CAG repeats versus symptoms,
that kind of analysis has not been done yet!
don48312 -- dr newman at henry ford hosp in detroit stated the more
repeats, the more severe the symptoms
chuck -- Thanks so very much Susanne for all of your hard labor and giving
to us so very much of your time....
susannew -- I don't believe that the questionnaire is landmark - but
certainly can glean some corrolations and perhaps new information as
hypothesis to follow-up on.
murf -- Susanne - I'll e-mail you about the conference this year. I should
get started on this but have to go for now
susannew -- Thanks Murray - John C. has volunteered to be the 2003 Meeting
Project Manager - you and him should talk!
billeric -- Susanne, guess I missed something. Has the next conferance bee
moved to New Orleans?
susannew -- Yes, the board decided at last week's board meeting that the
2003 conference will be held in New Orleans - I think it will be in
November as we will be "wrapping" our meeting around a national Neurology
Association's meeting - there will be more neurologists/researchers to
attend our meeting then.
billeric -- Sounds like a good choice
jeans -- susanne : I hope nest year, there will be french researchers at
the KD conference !
patrick -- It's a great idea. We can blend in there - everyone has problm
wkin aftr visiting Bourbon Street.
patrick -- wkin=walking
susannew -- Wrapping our 2002 conference around the Genetics Conference in
Baltimore allowed us to have more doctors/researchers at out meeting
(really made it possible at all) as the doctors/researchers paid their own
airfare (we just paid hotel/food for 1 day). If we had had to pay airfare,
we could never have afforded to have them all there.
don48312 -- Harrah's has a casino downtown New Orleans, hhhhhmmmmmmmmm
murf -- Have a great holiday season everyone!
don48312 -- bah humbug
butch -- Here is a wish for a Merry Christmas and a Happy New Year to all.
Stay healthy.
jeans -- thank you susanne for this job, with jean, we transmit a report
to jean jacques
susannew -- My mother-in-law (yes, that would be Terry's mother!) asked me
why the KDA card inside text didn't wish everyone a healthy new year!
We'll hav to do that next year. If you have artwork that you'd like to
have considered for next years' holiday card - get it out, dust it off,
and send us an email. We'll eventually give a deadline for this mid-2003.
patrick -- We should have a contest of original artwork for next year's
card - drawn or painted by someone with KD or a family member.
billeric -- bee=been
butch -- Will the next chat be on the 28th? I wasn't sure since it is
between the two holidays.


susannew -- Usually we do not hold a chat during the holidays, but Terry
just said he is willing to host - so yes, chat on the 28th open session.
susannew -- Jean - please send me the email addresses of French
doctors/researchers and we will add them to our email list. Many
doctors/researchers are now receiving the same emails you do, including
the chats and they have stated they read them and find them good
information.
mikeg -- If anyone would like to make a contribution to our cause using
your computer processing time, please look into this link.
http://folding.stanford.edu/ It uses your systems idle loop to do
processing for a Stanford University study on Protein Folding. I think it
could be beneficial for us. It's really useful if you leave your system on
24/7 like we do. I found it on Google's 'Whats New' icon in the Google
taskbar...
chuck -- Susanne, (hope this isn't too long) but this is one paragraph
from Charlie's letter from NIH. "From a genetic standpoint, we talked
about the fact that Kennedy disease results from the excessive expansion
of a section of a gene names the androgen receptor gene. The expansion is
the result of the repeat of the DNA bases (letters) "C", "A", and "G",.
These three DNA based are repeated in the men WITHOUT Kennedy disease
anywhere from 11-34 times. In men with KD, this section of the gene is
repeated greater than 35 times. It is this expanded three base repeat
makes the androgen receptor gene work abnormally and causes the sysmptons
that you know as KD". This explanation was sent to us by Jennifer Leib at
NIH.
susannew -- Speaking of conference - I am looking for someone to do video
duplication for us - I want to make the sessions of the conference
available to all for a small fee - but I cannot find a company to donate
video duplication or due it extremely cheaply - anyone know any one?
Please let me know!!!!
jeans -- susanne : OK i will do that with jj as soos as possible
susannew -- THanks Anna Lea - all information is welcomed!
susannew -- 15 more minutes before chat closes.
don48312 -- susanne, dont they make vcr's with duel bays?
susannew -- We have a VCR, but I'm concerned we would ruin them, as well
as our Video Camera due to a large amount of use... The KDA could purchase
a duel VCR - but the quality would be extremely poor.
don48312 -- i c
susannew -- Just so you all know, the MDA has us on a bi-weekly schedule -
so if we want to change, we need to advise them in advance... hence the
mixup last week - because we skipped THanksgiving weekend - but forgot to
tell the MDA!
mikeg -- Susanne, I'd be glad to 'burn' a few copies for you. I just need
to get our other recorder in Atlanta down here.
butch -- Must go for now. Stay healthy and see you all on the 28th.
butch -- {goodbye butch}
susannew -- Ok...now for that brand new car! How many reported dry eyes?
billeric -- This worked to my advantage. Was gone last week and hated to
miss this session.
patrick -- There are a number of theories relating CAG expansion to KD
onset, severity, and progresion. Even one's relative place on the family
tree.
don48312 -- 86%
patrick -- 69%
don48312 -- or none
billeric -- 17 per cent>
susannew -- THanks Mike. Perhaps we should send out an email and see the
interest level before we commit to manually doing on our own... I think
I'll send around an email later today in this regard. I believe everyone
should have access to the information from the conference, but it will
have to be through video as I can't find the time to transcribe - any
volunteers for that?
susannew -- I don't even know the answer - too many numbers floating
around my head!
jean -- 15%
patrick -- And I was going to donate a car to the winner :-(
susannew -- 35%
susannew -- So, noone wins a car today! Sorry!
susannew -- Patrick, did you ever pick up the car you bought at the silent
auction?
jean -- Next time there are 2 car to win?????
don48312 -- well, informative chat. gotta go now, bye and thanks susanne
patrick -- Still trying to coordinate weather and date.
jeans -- for all - i have to go, merry Xmas and have good holidays,
see/talk you later, take care
don48312 -- and remember, BAH HUMBUG!!!!!!!
susannew -- Time to sign off in 5 minutes. We wish you all a very happy
holiday and an even better new year!
billeric -- I was really surprised by the low numbers with enlarged
breasts and large calves. I thought everyone had those two.
patrick -- Au revoir, Jean
jeans -- {goodbye jeans}
susannew -- Don - you and your Bah Humbug - I know you don't mean it!
HAH!!!
jean -- Bonne fêtes de fin d'années Pat
billeric -- You did really good Susanne. This was a real good chat.
Thanks.
patrick -- Et tu
susannew -- We've seen many KDindividuals without the enlarged breasts,
but enlarged calves do seem to be an almost given - so interesting results
also... again, we need to put this into context due to ages reporting.
chuck -- Happy holidays to all KD'ers. Wishing for BIG steps in the
research field in "2003".
susannew -- Patrick: No se hablas francois!
jean -- Bye and best wishes for Xmes and 2003 to you all
mikeg -- Bye and Merry Christmas everyone.
susannew -- Please come see the new Web site design if you haven't and let
us know what you think... www.kennedysdisease.org
mikeg -- {goodbye mikeg}
patrick -- Enlarged calves also might be rlative - atrophied muscles are
expected to dramatically shrink - KD calves reflect infiltration with fat,
so maybe they just appear normal to many.
billeric -- Bye folks. Happy Holidays
billeric -- {goodbye billeric}
chuck -- {goodbye chuck}





END CHAT