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Does anyone know if there is any type of Jewish support group / network for TS people or their parents?
Please get my email from the mods
What about for the siblings
The amazing organization A Time, in BP has some resources for singles facing fertility challanges….
Simchas – What does your post have to do with Turner’s syn?
Health~ I would guess that ‘simchas’ has info to share.. not here, tho’.. (privately?)
Always – Wrong post! I was talking about the post right before mine!
oops! but didja google TS? I’m sure there’s a connection.
Always – Sorry, not like some posters here, I actually get my info from med books, not from Google. And I’m still wondering what Simchas meant in his/her post!
Health~ I have no medical experience, except for being an internist’s dream specimen :/ … but I can see a possible correlation. I’m just sayin’
Health, as a medical professional you are surely aware that many (or most) girls with Turner’s experience fertility issues. I’d guess simchas was alluding to this in his/her post.
Always – Well it would be nice if Simchas would tell us want he/she meant. I really don’t think you have to be his/her spokesman, as long as that blogger can answer themselves!
(didn’t realize we’d havta spell it out in black & white…. esp. to one who consults medical tomes.)
wake up on your left side today, didja?! 😉
anon for this – Quite possible, but why can’t Simchas speak for him/herself?
Btw -No one with Turners Syn should undertake becoming pregnant without discussing it with a Rov whom is an expert in medical issues!
Always – Why is it “We”? Is “Simchas” another one of your Screen names or do you know this poster and feel they can’t answer for themselves- so you have to be their spokesman?!
Health, do you know anyone with turners?
Health, do you know anyone with turners?
Simchas, how do I get your email also?
To berny #1 – No, I do not!
To berny #2 – No, I don’t!
Health~ it was the royal ‘We’ 😉 .. actually, I was responding to ‘anon for this’.
fyi- I only have this one SN, but as a member- equal to anyone else here in the CR- I am able to respond to any post. …..duh
Health, I’d imagine simchas isn’t on here all the time, so isn’t aware that you posted a follow-up question. I only posted because I was surprised that you’d ask such a basic question. Fertility issues are not some obscure aspect of TS, almost everyone with TS has some sort of fertility issue, as a direct consequence of lacking part/ all of an X-chromosome.
And no, I don’t have any other screennames. I barely post under my own.
Always & anon. – So you thought my question was so important that it needed an answer right away before Simchas had a chance to respond. But there is a deeper reason than what is posted -that if the poster Simchas is recommending that Turner syn patients try to become pregnant; so to this I posted -“No one with Turners Syn should undertake becoming pregnant without discussing it with a Rov whom is an expert in medical issues!” People with this syn have a lot of issues; infertility is by far not the most important one!
Justlookin, I too have a child with turners ask the mods to give you my email address. I would love too be in touch
Health, without an disrespect it seemed like the thread was started to reach out to others in the same matzav not to get advice from people who read medical books or look online.
I apologize for hijacking. selicha.
berny – You are correct, but it seems you are new here in the CR. The way it works in the CR -the topics go off on tangents. Some tangents are related – as you can see here with a medical discussion about TS. And sometimes the tangents have absolutely nothing to do with the topic!
justlooking – You missed the point. Whether he is here all the time or not, topics go off on tangents all the time. I understand why you started this topic, but this is a public forum. Some posts go off totally from the topic. Just to make you aware.
try the frum support forum for those with medical issues. (google)
i know about that group from ATIME.. it is mainly single girls with IF issues. not really the support you looking for at this point.
berny is your child little too? did you manage to get the email address just looking / berny (simchas – you too r affected?)
i’d love to hear what you say on the matter.. would you discuss it here
definately no need to say anything to school or others until she becomes of age where puberty sets in & she will wonders why its not coming..
Leah222 and princesseagle you both seem familiar with ts, do you know people who are affected?
justlooking, my daughter doesn’t have TS but I researched it because when she was a toddler/ preschooler she was so little that her pediatrician did a karyotype to rule it out. I’ve read that sometimes kids with TS can have learning difficulties. If a child with TS does have learning problems then if her school knows the diagnosis it might make it easier to obtain extra help for her.
Can anyone tell me how to contact the mods to get justlookins email address? My daughter is not a toddler but she’s not an adolescent yet either.
justlooking,
I suggest that you contact “A Time” and ask if anyone there can refer you to a support group for TS. My guess is that simchas couldn’t send you her (?) email address and was trying to hint to you how you can get in touch.
I used to work with someone with TS. When she was a child, growth hormone was not available so she was quite small in stature. However, she held down a full time job as a health care aid in the OR of the hospital I worked in. She was able to shlep patients on stretchers to and from the OR and countless other tasks. She eventually got married. This all took place about 30 years ago. I periodically run into her at the mall and she is still doing very well – she would be in her early 50’s (at least) now. I don’t have anything medically to give you but I just wanted you to know that her future does not have to be bleak.
justlooking, what you are saying makes perfect sense, and as a parent with direct experience you surely know better than I do. Some of my older kids need extra help in school, and in my town, it’s easier for them to get help from the school district (at their yeshiva) if there’s a medical diagnosis.
yes i know several.
i have seen a difference between TS and mosaic form – the latter eing girls with regular intelligence and more ‘regular’ looking. i also know that those with mosaic form have slight chance of conceiving b’ezh
how can we contact each other?
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