Turners Syndrome

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  • #596993
    justlooking
    Member

    Does anyone know if there is any type of Jewish support group / network for TS people or their parents?

    #772293
    simchas
    Member

    Please get my email from the mods

    #772294
    justlooking
    Member

    how?

    #772296

    What about for the siblings

    #772298
    simchas
    Member

    The amazing organization A Time, in BP has some resources for singles facing fertility challanges….

    #772299
    Health
    Participant

    Simchas – What does your post have to do with Turner’s syn?

    #772300
    always here
    Participant

    Health~ I would guess that ‘simchas’ has info to share.. not here, tho’.. (privately?)

    #772301
    Health
    Participant

    Always – Wrong post! I was talking about the post right before mine!

    #772302
    always here
    Participant

    oops! but didja google TS? I’m sure there’s a connection.

    #772303
    Health
    Participant

    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!

    #772304
    always here
    Participant

    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’

    #772305
    anon for this
    Participant

    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.

    #772306
    Health
    Participant

    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!

    #772307
    always here
    Participant

    (didn’t realize we’d havta spell it out in black & white…. esp. to one who consults medical tomes.)

    #772308
    always here
    Participant

    wake up on your left side today, didja?! 😉

    #772309
    Health
    Participant

    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!

    #772310
    Health
    Participant

    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?!

    #772311
    berny
    Participant

    Health, do you know anyone with turners?

    #772312
    berny
    Participant

    Health, do you know anyone with turners?

    #772313
    berny
    Participant

    Simchas, how do I get your email also?

    #772314
    Health
    Participant

    To berny #1 – No, I do not!

    To berny #2 – No, I don’t!

    #772315
    always here
    Participant

    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

    #772316
    anon for this
    Participant

    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.

    #772317
    justlooking
    Member

    my kid is still little – there r a lot of other issues aside from fertility issues involved with ts & therefore wanted to be in touch with others

    #772318
    Health
    Participant

    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!

    #772319
    berny
    Participant

    Justlookin, I too have a child with turners ask the mods to give you my email address. I would love too be in touch

    #772320
    berny
    Participant

    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.

    #772321
    always here
    Participant

    I apologize for hijacking. selicha.

    #772322
    Health
    Participant

    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!

    #772323
    justlooking
    Member

    Health- seeming to be new doesn’t mean a thing – I’ve been reading the cr for years & just posted for the first time. Additionally, some threads are for the purpose of general discussion & others aren’t. I wasn’t trying to just shmooze – I really am trying to find out if there are any groups/networks for jewish ts girls or their families.

    Anyways, I don’t see any medical discussion going on here & usually people involved in such a condition wouldn’t come to the cr for medical advice from anonymous posters who may or may not know what they are talking about. we do a ton of research & try to see top medical professionals for such advice.

    #772324
    Health
    Participant

    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.

    #772325
    Leah222
    Member

    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.

    #772326

    berny is your child little too? did you manage to get the email address just looking / berny (simchas – you too r affected?)

    #772327
    justlooking
    Member

    I’m not sure how to contact the mods but you can ask the mods for mine.

    #772329

    i’d love to hear what you say on the matter.. would you discuss it here

    #772330
    justlooking
    Member

    I would… where to start? my daughter is still a toddler, already had cardiac surgery, has never ending ear issues, is on growth hormones for a year&half already(daily injections), had tons of feeding issues, tons of therapy, yet anyone who meets her would never know what she goes through & thinks she is the cutest happy go lucky kid. Everyone comments how she’s really catching up & I bite my tongue & hold back from saying – yeah, growth hormones are wonderful!

    Now she’s still little, and so are her siblings, but I cant stop worrying about how this will all play out – I want her to stay happy, I really dont want her to have self-pity as she grows up.

    Also-for now it’s basically a secret-only grandparents know about it-& it’s only so that she’ll develop without the world pitying her – but I keep wondering if thats good or not? is there ny reason for her school to know? wold that be a benefit or disadvantage?

    whatever, I an keep going on- but what’s anyone else with experience have to say on the matter?

    #772331
    Leah222
    Member

    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..

    #772332
    justlooking
    Member

    why would I tell her school at that point? Do you mean I should tell her then? I think she will want to know what’s going on way before then – she gets growth hormone shots everyday & see’s a variety of specialists on a pretty regular basis. Her sibling also see that she obviously has issues that they don’t – I dont think I will keep it a secret for her or her sibling – I dont want them feeling as if they have some terrible issue to hide & then wallow in self pity.

    #772333
    berny
    Participant

    Leah222 and princesseagle you both seem familiar with ts, do you know people who are affected?

    #772334
    anon for this
    Participant

    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.

    #772335
    berny
    Participant

    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.

    #772336
    ☕ DaasYochid ☕
    Participant

    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.

    #772337
    minyan gal
    Member

    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.

    #772338
    justlooking
    Member

    berney – care to share how it’s going for your daughter here? I’m not sure if the mods will share our emails.

    minyan gal – thanks! I’m so happy that your friend has a normal productive life. that’s why I want to meet other people in our community & hear success stories of the normal lives they have. For now my daughter is doing great (socially no one would guess she has any issue) & I want to know how it goes for others.

    anon for this- if she starts to display any learning delays I think I would tell the school so that she can get whatever help she can to succeed in life. If her learning seems ok – I was thinking that she should just be a regular, typical kid who can enjoy life- she’ll have enough headache later when it comes to building a family. however, this is my opinion before experience & was wondering how others have managed.

    #772339
    anon for this
    Participant

    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.

    #772340
    Leah222
    Member

    yes i know several.

    #772341
    Leah222
    Member

    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

    #772342
    justlooking
    Member

    leah222-how did you meet them? I would love to be in touch with others.

    #772343
    Leah222
    Member

    how can we contact each other?

    #772344
    justlooking
    Member

    i dont know. mods?

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