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ISO support for teen daughter with Crohn's



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amother
OP  


 

Post Wed, Jan 08 2025, 11:10 pm
Does anyone know of an organization for girls with Crohn's or similar conditions? My 14 year old daughter was just diagnosed with Crohn's and it's a difficult thing for her to adjust to and accept (naturally). As much as I'm doing my best to help her in every way that I can, she feels that she'll get a lot of chizuk from talking to other girls who are dealing with similar challenges and will understand what she's going through. I would love for her to join such a place if it exists. If you have any leads, pls share! Thank you.
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amother
Whitewash  


 

Post Wed, Jan 08 2025, 11:18 pm
My dd is 15. Was diagnosed at 7 so doesn’t really think about it.
I was given this info but don’t know s thing about it. I decided not to follow up on it bec didn’t want to make my dd feel more different.

https://myteamsupports.org/abo.....ions.
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amother
Anemone


 

Post Yesterday at 1:22 am
My Team! It's a great organization exactly for this and it gives amazing support! I know people with crohns who were really helped by it
https://myteamsupports.org/
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ray family




 
 
    
 

Post Yesterday at 2:27 am
Just found out about my team. Sounds like an amazing organization
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amother
  OP


 

Post Today at 11:16 am
Thank you to everyone who suggested My Team. I looked at their website and it looks exactly like what my daughter is looking for. If anyone else has experience with them, I'd love to hear more.

In response what @whitewash said about your daughter feeling different, I think mine already feels different, just by virtue of the fact that she is dealing with something that her friends simply can't relate to. So if anything, joining an organization with other girls who are just like her would make her feel LESS different and more normal. (I understand why it didn't feel relevant for your daughter. Just explaining why it seems right for mine).
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BusyBoys




 
 
    
 

Post Today at 11:36 am
amother OP wrote:
Thank you to everyone who suggested My Team. I looked at their website and it looks exactly like what my daughter is looking for. If anyone else has experience with them, I'd love to hear more.

In response what @whitewash said about your daughter feeling different, I think mine already feels different, just by virtue of the fact that she is dealing with something that her friends simply can't relate to. So if anything, joining an organization with other girls who are just like her would make her feel LESS different and more normal. (I understand why it didn't feel relevant for your daughter. Just explaining why it seems right for mine).


Hi!
I myself have Crohn’s for close to 20 years.

I am a long time volunteer with myteam.

Feel free to pm with any specific questions ,or you can ask here if you’re not comfortable with messaging me.
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amother
  Whitewash


 

Post Today at 12:36 pm
I hear that.

The beginning is so overwhelming.
Getting a diagnosis.
Doing the mri.
Colonoscopy and Endoscopy are so scary Trying new meds (sometimes with bad reactions).
Weaning off prednisone.

It’s a crazy whirlwind.

But hopefully the meds start working (my dd seems to break out from them).
Iy’H You start feeling better.
And it becomes a cycle of managing meds. Going to 6 months dr appts. And doing colonoscopy and mri every so often to monitor progress (we don’t like to think about those…). I like to present it as normal life bec it will be her life. Iy’H I want her to marry, have kids, live life and not look at it as something that limits her in any way.
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challenging




 
 
    
 

Post Today at 1:12 pm
My neice was diagnosed at age 12 and ever since shes connected to myteam an amazing group where she gets soo much support bh.
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