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Re: [One Big Huntingtons Family] welcome new members

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  • clarey7@cs.com
    thank you for the welcome. my husband is effected and my 14 yo son at risk. how are you doing? are you thinking about ursdiol? i m oing to try to get it from
    Message 1 of 12 , Aug 1, 2002
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      thank you for the welcome. my husband is effected and my 14 yo son at risk.
      how are you doing? are you thinking about ursdiol? i'm oing to try to get it
      from our neurologist it is about $75 a month my pharmacist tells me. but the
      rresearch looks good and i am playing for time here. my son is only 14 and he
      needs his father. clare
    • frannie1996
      ... was in the nursing home when he died. i was four when he was diagnosed. so, i know what your son is going through. its hard to watch your parent go through
      Message 2 of 12 , Aug 1, 2002
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        --- hi, my father had it too but he died 2 years ago at age 53. he
        was in the nursing home when he died. i was four when he was
        diagnosed. so, i know what your son is going through. its hard to
        watch your parent go through that. when my father died he was in the
        very last stages and only weighed 90 pounds he looked like one of
        those little anorexic girls. he died of pneumonia. my mother told
        me if your father has it then your symptoms start at an earlier age
        than if your mom had it. and that does seem true in the hd club i am
        in. i've never heard of anyone having jhd if their father didn't
        have it.

        have you been keeping up with the stem cell research. its not a Cure
        but it does help your symptoms. i am sorry about your husband
        dianosis. is he showing symptoms > thank you for the welcome. my
        husband is effected and my 14 yo son at risk.
        > how are you doing? are you thinking about ursdiol? i'm oing to try
        to get it
        > from our neurologist it is about $75 a month my pharmacist tells
        me. but the
        > rresearch looks good and i am playing for time here. my son is
        only 14 and he
        > needs his father. clare
      • sally.fraser
        How can you possibly be symptomatic at age 23?? What type of symptoms do you have? Do you have children? If not, have you heard about PGD treatment? I am due
        Message 3 of 12 , Aug 5, 2002
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          How can you possibly be symptomatic at age 23??

          What type of symptoms do you have?

          Do you have children? If not, have you heard about PGD treatment?

          I am due to undergo PGD in December this year.....
          ----- Original Message -----
          From: frannie1996
          To: onebighuntingtonsfamily@yahoogroups.com
          Sent: Wednesday, July 31, 2002 8:07 PM
          Subject: [One Big Huntingtons Family] welcome new members


          hi, just wanted to welcome the new members sorry you have a reason
          to be here,but glad you found us. i am frannie 23 and symptomatic.


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        • clarey7@cs.com
          what is pgd tx? does anyone know if there is a place that a kid can be tested for the hd gene? clare
          Message 4 of 12 , Aug 5, 2002
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            what is pgd tx? does anyone know if there is a place that a kid can be tested
            for the hd gene? clare
          • frannie1996
            --i probably have junior hd but i don t know because i never got the test , when i was tested at age 20 ,my doctor said she was 99 percent postive that i had
            Message 5 of 12 , Aug 5, 2002
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              --i probably have junior hd but i don't know because i never got the
              test , when i was tested at age 20 ,my doctor said she was 99
              percent postive that i had it , she could tell by watching me walk,
              i think my symptoms started in high school. my father had it when he
              died mom donated his brain to hd. no i haven't heard about pgd,
              please tell me about it. i got my tubes tied before i got married,
              because i can not take care of a child, and we really don 't want
              kids of our own . my older sis tested neg and she had a baby last
              march, plus his brother has 2 kids. my symptoms are i drop almostt
              everything, have trouble eating and making it to my mouth,
              shaking,choking
              - In onebighuntingtonsfamily@y..., "sally.fraser"
              <Sally.Fraser3@b...> wrote:
              >
              > How can you possibly be symptomatic at age 23??
              >
              > What type of symptoms do you have?
              >
              > Do you have children? If not, have you heard about PGD treatment?
              >
              > I am due to undergo PGD in December this year.....
              > ----- Original Message -----
              > From: frannie1996
              > To: onebighuntingtonsfamily@y...
              > Sent: Wednesday, July 31, 2002 8:07 PM
              > Subject: [One Big Huntingtons Family] welcome new members
              >
              >
              > hi, just wanted to welcome the new members sorry you have a
              reason
              > to be here,but glad you found us. i am frannie 23 and
              symptomatic.
              >
              >
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              >
              >
              > [Non-text portions of this message have been removed]
            • sally.fraser
              PGD is a treatment which is similar to IVF (people with fertility problems). With PGD, they take the eggs out of the affected person (if the affected person is
              Message 6 of 12 , Aug 5, 2002
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                PGD is a treatment which is similar to IVF (people with fertility problems). With PGD, they take the eggs out of the affected person (if the affected person is a female), they then fertilise the eggs with the partner/husband's sperm and they can then test the embryos to see which ones have the gene and which ones do not. The ebryos that do not have the gene are implanted to the woman, therefore creating a baby with out the HD gene 99.9%.
                ----- Original Message -----
                From: clarey7@...
                To: onebighuntingtonsfamily@yahoogroups.com
                Sent: Monday, August 05, 2002 7:44 PM
                Subject: Re: [One Big Huntingtons Family] welcome new members


                what is pgd tx? does anyone know if there is a place that a kid can be tested
                for the hd gene? clare

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              • frannie1996
                ... can be tested
                Message 7 of 12 , Aug 5, 2002
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                  --- In onebighuntingtonsfamily@y..., clarey7@c... wrote:
                  > what is pgd tx? does anyone know if there is a place that a kid
                  can be tested
                  > for the hd gene? clare how old is your kid
                • clarey7@cs.com
                  welcome to the group. my name is clare and my husband has hd and my son is at risk
                  Message 8 of 12 , Aug 30, 2002
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                    welcome to the group. my name is clare and my husband has hd and my son is at
                    risk
                  • frannie1996
                    ... my son is at
                    Message 9 of 12 , Aug 30, 2002
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                      ---hi, sorry to hear that. how old are they? is he symptomatic like
                      me. In onebighuntingtonsfamily@y..., clarey7@c... wrote:
                      > welcome to the group. my name is clare and my husband has hd and
                      my son is at
                      > risk
                    • clarey7@cs.com
                      dear dorothy, i am sorry i am cleaning out my mailing list and just found you email. i should have answered sooner. my husband is on creatinine and i can t say
                      Message 10 of 12 , Sep 22 5:43 PM
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                        dear dorothy, i am sorry i am cleaning out my mailing list and just found you
                        email. i should have answered sooner. my husband is on creatinine and i can't
                        say that i have seen much improvement although in the beggining he said it
                        did give him more energy. we would like to try tudca. but will probably be
                        content to try its cousin. i need to get health insurance. the history you
                        relate is incredibly hard. i am not crying so much yet. i am in the screaming
                        stage. i just got back from a conference we had in naples fla and it was
                        wonderful to hang out with other people in the same boat. i cried and laughed
                        and got a little tipsy. and was inspired and got a whole lot more strength.
                        clare
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