Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript

05-04-02

Topic: Carriers Issues



Chat Participants:


johnm 
ms-ronni 
patrick 
chuck 
don48312 

Begin Chat


ms-ronni -- Hi john we have a beautiful sunshining morning here in MI How
is it your way

johnm -- We have a beautiful sunshining morning every morning here in Florida.
johnm -- Looks like things are starting out pretty slow this morning.
chuck -- {welcome chuck}
ms-ronni -- Hi Chuck
chuck -- Beautiful morning here in WV but had frost this AM.
johnm -- Chuck, Frost in the morning doesn't even look good to me just
talking about it, much less being there.
chuck -- One day in 80's and next day frost. Just can't seem to make up its mind.
ms-ronni -- MI weather changes daily frost to 60's But that's MI
johnm -- Do either of you know what the subject was to be this morning?
ms-ronni -- I am luck I didn't have to work this morning. Being involved
with Carriers I am glad I could be here today Carrier issues is the topic
johnm -- I haven't been too involved with carriers as our daughter was
adopted. My two sisters may be carriers but their kids don't have any of
the symptoms yet.
chuck -- We have one daughter who is a carrier.
ms-ronni -- For woman who want to get tested should be sure to know the DR
understands the type of test needed for KD. One woman was tested for Child
MD. What a loss and expense for nothing.
ms-ronni -- Its good to communicate. This woman in question was given
copies of our family results (she is family) to be given to her DR and
another test in being done
johnm -- My Mother's sister was a carrier and my cousin put me on to the
blood test to confirm KD.
chuck -- It was our understanding from NIH in Wash. that children can't be
tested until age 18 and they must consent.
ms-ronni -- Besides carriers worrying about symptoms are there any other
questions in your family that are brought up? To you both...
chuck -- I am confused - what sort of questions?
johnm -- My family is concerned about the insurance consequences if they
know what they have.
ms-ronni -- Genetic counselors will not test children for KD. Their
reasoning in most cases is leave the child to grow and mature with parents
trying to redirect their future
ms-ronni -- it is WITHOUT PARTNETS TRYING TO DIRECT ...ETC SORRY
ms-ronni -- Do you get questions who is likely to get KD, boys, girls,
Questions directed to you about first signs of symptoms?
chuck -- We are speaking of our grandchildren being tested when they
become of age (if they wish to be tested). NIH did not say they would not test.
johnm -- Ronni, the only questions I get are about how long I have had KD.
ms-ronni -- Are family members concerned about possibly being a carrier?
johnm -- My family doesn't seem overly concerned and seem to want to let
the chips fall where they may and just accept what the good Lord has to offer.
chuck -- Not to change the subject but I wonder where everyone is today? I
too feel if the children/grandchildren are young enough we pray there may
be help for them by the time they grow up.
ms-ronni -- With KD by the time it is diagnosed 2nd generation family have
been started in many cases. It seems like john says, let the chips fall
is many people reaction.
patrick -- {welcome patrick}
ms-ronni -- Good to see you Patrick
patrick -- Hello everyone. Sorry I'm late. My dog ate my computer. ;-)
chuck -- Any damage done Patrick???
johnm -- Patrick, some of us will use any excuse we can to make up for our forgetfulness.
patrick -- Chuck, no, it was a long story of Internet problems, which my
ISP said was my fault or the phone company, the phone company blamed it on
my ISP or my software, the software tech support blamed it on my ISP or
the phone company, etc. etc. I blamed on my dog who died a couple of years
ago, but I'd stripped and reloaded so many applications, I had to
reconfigure things this morning to get the chat working.
chuck -- I send you my condolences - sometimes between computer and cell
phones I think I may loose it complete.....
johnm -- Patrick, I just went through the same thing with my computer but
found I had a bad memory stick causing my problems.
ms-ronni -- I gave up on the regular AOL etc. and went cable. I really like it
don48312 -- I added 128 meg of memory and puter works just fine now
johnm -- I don't use the Internet enough to warrant the additional expense of cable.
patrick -- My problem turned out to be a flaky router/modem that the ISP
wasn't able to diagnose from afar. It turned out it was an ISP problem after all.
johnm -- I've been using Juno and MSN. Both have been working just fine
but I'll give up MSN when my free year runs out.
ms-ronni -- With progress in research there could very well be a cure or
help in the 20 to 30 years ahead for many
ms-ronni -- I tell this to many of the people who contact me
johnm -- It's just too bad that most of us now can't wait 20 or 30 years
to get the help we need.
don48312 -- what is this about 10-20 years till cure? I wuz counting on next year
patrick -- Hi Ronni. Thanks for hosting the chat today. I understand the
primary topic is about carriers concerns. Am I correct?
ms-ronni -- Yes and I am glad I didn't have to work so I can be here
ms-ronni -- My daughter (carrier) says she will let the children grow
naturally When the time comes they will be told about KD and its problems.
Until then if they choose to be sports stars, mountain climbers, etc. she
will be there rooting them on.
johnm -- Ronni, I think that may a good way to go. Let them live the good
life for as long as they can.
don48312 -- {welcome don48312}
don48312 -- good morning all
johnm -- Hi Don, is Mike staying with you again when he comes down?
don48312 -- john, yup, mike staying with us this weekend, call if u want 2 visit, k?
ms-ronni -- Hi Don
ms-ronni -- Wow what great company...one woman and the guys
don48312 -- where in MI ms-ronni, lived in e det, sterling heights and caseville in past
ms-ronni -- Redford just over the Det border
don48312 -- west sider
patrick -- Back to the chat topic. Besides just knowing if one (an
undiagnosed child, adolescent, or adult) is a carrier or may get KD, are
their any reasons why a test should be done? Conversely, besides the
potential consequences to insurance, etc., what are the reasons a test should NOT be done?
ms-ronni -- A female coming into the child bearing years may want to know
if she is a carrier. Then decide if to have children. A few carriers do
not want to have children. For one reason
johnm -- ms-ronni, I think that would be a very good reason to be tested.
patrick -- I recently received a telephone call from a woman whose
brothers had been diagnosed with KD. This woman had had children, and was
pregnant, but did not know if she was a carrier. We discussed that, but
more importantly, she had had mild but continuous neuromuscular symptoms
which had her doctors mystified. She wanted to know if a carrier could
have KD symptoms. Does anyone have any comments about that?
ms-ronni -- I know of a couple men who choose not to father children
because of KD Any input on this thought?
chuck -- These are our thoughts since our grandchildren are getting close
to that age. We have two grandchildren which are both females.
patrick -- A man with KD will father sons WITHOUT the KD trait, but will
father daughters WITH the trait. A woman who is a carrier will give birth
to her children, each of whom will have a 50% chance of inheriting the KD trait.
chuck -- Patrick, that 50% chance of inheriting is correct, however in my
case it didn't hold true. My parents had two children both males and we both have KD.
patrick -- Chuck, the 50% is a pure 50-50 chance for each conception. It
doesn't mean that half of a couple's kids will get the trait, and the
other half will not. I guess God rolls the dice for each child.
ms-ronni -- There are those option out there It is what I refer to when
woman say they fear the outcome. It is there decision one way or the other.
ms-ronni -- My daughter and myself have slight twitches. She was tested
for everything but nothing conclusive. Rarely a female has more dominate
symptoms. I tend to think it may have something to do with the cag repeats
more so with the woman
chuck -- I believe I have heard or read that a female could have symptoms,
however, it was not thought KD would be as crippling to a female as a male.
ms-ronni -- That is what is said chuck
ms-ronni -- My mom had 4 boys 1 girl (me) We are all affected
don48312 -- in our family, 3 boys and 2 girls, I wuz the only one who had KD
patrick -- Current reproductive science is incredible, IF you have
insurance to cover it or can afford such services yourself. There are
techniques to ensure a KD man only fathers sons. There are also ways to
use invitro fertilization to ensure the KD trait is excluded.
ms-ronni -- 50% holds true with my daughter (2) one is and one is not a carrier
ms-ronni -- Its one of the biggest "IF's" in life
johnm -- I'm not sure about my brother. He is just going about living and
doesn't want to be tested at this point. He is in his late 40's.
ms-ronni -- He may not have to john, if he has no symptoms
don48312 -- {welcome don48312}
don48312 -- HIT WRONG BUTTON
don48312 -- how many here are going to convention in balt?
johnm -- No convention for me Don.
chuck -- We are planning on going but haven't made any resvs. yet. Must get on the ball.
don48312 -- we are going Sunday morning and flying out Tues. night after last meeting
chuck -- We are only approx. 80 miles away so we will be driving down Sun.
afternoon and departing Tues. evening.
don48312 -- good 2 hear chuck
patrick -- As far as the conference, I plan to go. I'm considering
driving, although it is 1300 miles or so. I dread such a drive, but it may
be my last chance to see the country. Any thoughts, guys?
don48312 -- ms ronni, do u guys in redford use dr newman at henry ford
hosp? he is a great doc
ms-ronni -- Wish lived near to md. its a long drive from MI.
ms-ronni -- Been to HF but not Dr newman. They have many good drs there
patrick -- One way to look at it is to be tested when you're a young boy.
If the test is negative for KD, live your life as usual. If the test is
positive, then you could pack as much living, doing, excitement, etc. into
your life early, before you lose the ability to do so later on in life.
ms-ronni -- Now my dog needs to go outside and he's alive be right back
chuck -- Yes Patrick, I really feel it must be left up to each individual
to come to this decision. It requires a lot of thought.
patrick -- If I knew I was going to be immobilized at age 50, I think I
would have done some things that I haven't, like visit New Zealand,
skydive, or take an African safari....
ms-ronni -- I am going to pass your thoughts to my niece who has be
thinking about have her son tested
chuck -- Must leave now. Enjoyed visiting with you all. Hope to see a lot
b of KDer's in Oct. Bye
johnm -- I haven't missed out on too much and have pretty much lived the
good life. I still try to do as much as I possibly can.
don48312 -- ditto john m. see ya 2morrow or Monday maybe
don48312 -- time 2 go. nice chat. cya in 2 weeks
chuck -- {goodbye chuck}
ms-ronni -- excuse my typing...my fingers aren’t going as fast as the brain
Thanks guys for the chat
johnm -- I think it has been harder on my wife than it has on me. She
keeps telling me there are things that she would like to do that we can't do now.
ms-ronni -- Until next time Bye
ms-ronni -- {goodbye ms-ronni}
johnm -- Bye ms-ronni, enjoy your walk.
patrick -- Another issue that I mentioned before is the effects of KD on a
boy during puberty. I saw an educational TV show on androgen insensitivity
syndrome (AIS). Although technically males have XY chromosomes and females
have XX chromosomes, that alone does not determine gender. The fetus is
exposed to various hormones in the womb, androgen (e.g. testosterone)
being one. If there is insufficient androgen, a boy (XY) could be born
with female body parts. After birth, especially at puberty, the effects of
AIS can also affect boys with KD. Medicine can counteract those effects.
patrick -- Are there any chatters still on line?
patrick -- Don and John, are you still here?
johnm -- I'm still here but don't have anything else to say.
ms-ronni -- Guess we are all gone
ms-ronni -- Thanks for coming on
patrick -- John, any thoughts about the playoffs?
johnm -- Patrick, I don't even know which playoff you might be talking about.
patrick -- Basketball. Although I'm not a Lakers fan,I think they will
dominate again.
johnm -- It's just about over so I guess I'll be leaving also. I'll be back in a couple weeks.
johnm -- {goodbye johnm}
patrick -- Well, it looks like we're at the end of our time. Thanks, and
goodbye Ronni. Adios, John.
patrick -- {goodbye patrick}

End Chat