new member...introduction
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riveraXVX
Feb 19, 2011, 7:09:58 PM2/19/11
to Schwartz-Jampel Syndrome
Hi there,
not sure where to get my introduction started ... so I'll start with
the basics! my name is John Rivera and I'm 29 years old residing in
Greensboro NC
I only have recently, a few months ago discovered I was diagnosed as
having SJS as a child. I never knew about this until my mom gave me
some paperwork from when i was evaluated as a child, as SJS was just
one of many abnormalities I was born with. (as of the early 80s I had
the most unique/severe curve from scoliosis, and many of my bodies
features and problems I had always sort of blindly chalked up to being
issues due to my back... unaware of even what SJS was, let alone that
I was born with it also. (squinty eyes, small stature, protuding
chest, small mouth, limited range of mobility in hips/shoulders/etc)
I am about 4 weeks away from being a father for the first time, our
little girl is due to arrive sometime around March 27th it was thanks
to my researching and worry i got the paperwork from my mom and
discovered all this. a lot of things i was unaware about my body or
why it was how it is were answered in discovering having SJS.
far as physically... I don't really know how to compare pain/
discomforts/etc to others as this is all I know anyway but I get by
just fine. I am 4'11" tall, and weigh approximately 85 lbs. I have
an appetite that is unstoppable just never in my life have ever gained
weight no matter what. I'm vegan and have been for the better part
of the past 10 years now, very physically active and workout pretty
regularly... small in frame, but strong. (granted getting slower and
slower and more aches and pains as the years go on)... don't have
very good circulation to my hands / feet which is made very apparent
walking around for long lengths of time.
really not sure what else to say about myself figure I've skipped
around on subjects and info enough, any questions lemme know!
-John
not sure where to get my introduction started ... so I'll start with
the basics! my name is John Rivera and I'm 29 years old residing in
Greensboro NC
I only have recently, a few months ago discovered I was diagnosed as
having SJS as a child. I never knew about this until my mom gave me
some paperwork from when i was evaluated as a child, as SJS was just
one of many abnormalities I was born with. (as of the early 80s I had
the most unique/severe curve from scoliosis, and many of my bodies
features and problems I had always sort of blindly chalked up to being
issues due to my back... unaware of even what SJS was, let alone that
I was born with it also. (squinty eyes, small stature, protuding
chest, small mouth, limited range of mobility in hips/shoulders/etc)
I am about 4 weeks away from being a father for the first time, our
little girl is due to arrive sometime around March 27th it was thanks
to my researching and worry i got the paperwork from my mom and
discovered all this. a lot of things i was unaware about my body or
why it was how it is were answered in discovering having SJS.
far as physically... I don't really know how to compare pain/
discomforts/etc to others as this is all I know anyway but I get by
just fine. I am 4'11" tall, and weigh approximately 85 lbs. I have
an appetite that is unstoppable just never in my life have ever gained
weight no matter what. I'm vegan and have been for the better part
of the past 10 years now, very physically active and workout pretty
regularly... small in frame, but strong. (granted getting slower and
slower and more aches and pains as the years go on)... don't have
very good circulation to my hands / feet which is made very apparent
walking around for long lengths of time.
really not sure what else to say about myself figure I've skipped
around on subjects and info enough, any questions lemme know!
-John
Daniel Ocio
Feb 20, 2011, 7:44:58 AM2/20/11
to schwartz-jam...@googlegroups.com
Hi John. As well as you, I think all of us have the same abnormalities (and more: porr sight for example in my case).
--
dany_danay Foro-PTC será siempre mi casa y será parte de mi siempre, cómo la "oscuridad".
Welcome to the group, and sorry for my english (Im from Spain, 21 years old.)
2011/2/20 riveraXVX <xfear...@gmail.com>
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dany_danay Foro-PTC será siempre mi casa y será parte de mi siempre, cómo la "oscuridad".
Tammy Urioste
Feb 20, 2011, 11:31:23 AM2/20/11
to schwartz-jam...@googlegroups.com
Hi John,
Thanks for sharing your story. Welcome to the group. Contragulations on your baby, that is so exciting!!
riveraXVX
Feb 20, 2011, 3:10:35 PM2/20/11
to Schwartz-Jampel Syndrome
no worries Daniel, I can tell you for sure, your english as a 2nd
language is 30x better than my spanish ;)
I will be typing up the old letters from the doctors who evaluated me
at birth and then at the specialist/college that ended up doing my 2nd
evaluation at i think 6 months where they determined i had SJS
I guess to open up platform for open discussion, if anyone has any
questions about having SJS from birth and any random troubles/pitfalls/
etc feel free to ask. I am not in the least bit shy. speaking with
tammy a bit more via e-mail and from the sounds of her child, seems
we have a similar drive and workhorse mentality growing up with SJS.
On Feb 20, 7:44 am, Daniel Ocio <ociod...@gmail.com> wrote:
> Hi John. As well as you, I think all of us have the same abnormalities (and
> more: porr sight for example in my case).
> Welcome to the group, and sorry for my english (Im from Spain, 21 years
> old.)
>
> 2011/2/20 riveraXVX <xfearnog...@gmail.com>
language is 30x better than my spanish ;)
I will be typing up the old letters from the doctors who evaluated me
at birth and then at the specialist/college that ended up doing my 2nd
evaluation at i think 6 months where they determined i had SJS
I guess to open up platform for open discussion, if anyone has any
questions about having SJS from birth and any random troubles/pitfalls/
etc feel free to ask. I am not in the least bit shy. speaking with
tammy a bit more via e-mail and from the sounds of her child, seems
we have a similar drive and workhorse mentality growing up with SJS.
On Feb 20, 7:44 am, Daniel Ocio <ociod...@gmail.com> wrote:
> Hi John. As well as you, I think all of us have the same abnormalities (and
> more: porr sight for example in my case).
> Welcome to the group, and sorry for my english (Im from Spain, 21 years
> old.)
>
Elizabeth G.
Feb 20, 2011, 3:25:30 PM2/20/11
to Schwartz-Jampel Syndrome
P.S. I forgot to mention that my daughter was born in Greenville, NC -
we were stationed at Seymour Johnson AFB a few years ago!
we were stationed at Seymour Johnson AFB a few years ago!
Elizabeth G.
Feb 20, 2011, 3:31:05 PM2/20/11
to Schwartz-Jampel Syndrome
Apparently my first post didn't go through. Grrr.
Anyways, Welcome to the group, John!
My name is Liz - I'm 33 and I have a 5 year old. I too have similar
attributes to you and Tammy's son. If you would like to read more, you
can read my intro in the older threads. I have not met any other women
with SJS who have given birth to a child. If you have any questions
about energy levels and such, please let me know. I get tired a lot
more since my husband is in the military and he is gone a lot, so I am
home alone quite often. I know there are other males with SJS who have
children.
To the others in the group - I'm sorry I have not kept in touch. We
have recently moved to England! We love it here and can't wait to go
exploring.
Cheers!
Liz
Anyways, Welcome to the group, John!
My name is Liz - I'm 33 and I have a 5 year old. I too have similar
attributes to you and Tammy's son. If you would like to read more, you
can read my intro in the older threads. I have not met any other women
with SJS who have given birth to a child. If you have any questions
about energy levels and such, please let me know. I get tired a lot
more since my husband is in the military and he is gone a lot, so I am
home alone quite often. I know there are other males with SJS who have
children.
To the others in the group - I'm sorry I have not kept in touch. We
have recently moved to England! We love it here and can't wait to go
exploring.
Cheers!
Liz
debraca...@verizon.net
Feb 21, 2011, 10:02:57 AM2/21/11
to schwartz-jam...@googlegroups.com
Dear John,
Welcome to our group...Congratulations on your baby daughter!!!! How absolutely wonderful!!! I have a son (6) with SJS...this group is so wonderful for support, questions, feedback, opinions, alternative treatment ideas....really fantastic!!! We are happy to have you.
Aaron, so sorry to hear about the loss of your dad, I didnt know that...my sincere condolences.
Elisabeth, Congratulations on your family's new adventure...Live it up!!!
Sincerely,
Debbie Campbell
no worries Daniel, I can tell you for sure, your english as a 2nd
language is 30x better than my spanish ;)
I will be typing up the old letters from the doctors who evaluated me
at birth and then at the specialist/college that ended up doing my 2nd
evaluation at i think 6 months where they determined i had SJS
I guess to open up platform for open discussion, if anyone has any
questions about having SJS from birth and any random troubles/pitfalls/
etc feel free to ask. I am not in the least bit shy. speaking with
tammy a bit more via e-mail and from the sounds of her child, seems
we have a similar drive and workhorse mentality growing up with SJS.
On Feb 20, 7:44 am, Daniel Ocio wrote:
> Hi John. As well as you, I think all of us have the same abnormalities (and
> more: porr sight for example in my case).
> Welcome to the group, and sorry for my english (Im from Spain, 21 years
> old.)
>
> 2011/2/20 riveraXVX
>
>
>
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