Mothers of a child with a genetic disorder

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Forum -> Children's Health

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View latest: 24h 48h 72h

amother

Thu, May 04 2023, 6:36 pm

Just feeling really lonely today. Nobody else knows the diagnosis except my husband and a few medical professionals, not even all of them. Give me a shoutout if you can relate.

amother

Wine

Thu, May 04 2023, 6:39 pm

hugs im right there with you unfortunately. worried for the future for our kids. I need to be better at davening for them but it is just so hard.

amother

Thu, May 04 2023, 6:42 pm

Yes it’s hard. Also anxiety producing and just plain lonely.

Davening especially. It’s easy enough to daven for a week or a month. Much harder when it’s decades.

boat

Thu, May 04 2023, 6:58 pm

Feel free to share more and unburden.

Last edited by boat on Fri, May 05 2023, 2:02 pm; edited 1 time in total

amother

Crimson

Thu, May 04 2023, 7:05 pm

I’m here with you too. It’s a lonely and isolating journey.

amother

Thu, May 04 2023, 7:09 pm

amother Crimson wrote:

I’m here with you too. It’s a lonely and isolating journey.

Yes, it's hard enough that the professionals have never heard of this condition. But it's harder still when you feel you cant share it with anyone.

amother

Lavender

Thu, May 04 2023, 7:14 pm

I’m here too. My child is doing well today and people would never guess but in a way that makes it lonelier. And I worry about their future. It’s a very private and not discussed struggle.

amother

Saddlebrown

Thu, May 04 2023, 7:55 pm

I get you. Anyone else have a child diagnosed with Klinefelter ?
I searched imamother and it hasn’t come up.
It’s so hard because nobody knows besides my husband and I and the dr.

amother

Lavender

Thu, May 04 2023, 7:57 pm

amother Saddlebrown wrote:

I get you. Anyone else have a child diagnosed with Klinefelter ?
I searched imamother and it hasn’t come up.
It’s so hard because nobody knows besides my husband and I and the dr.

Facebook groups are a lifesaver in such situations.

amother

Pumpkin

Thu, May 04 2023, 7:58 pm

I can relate. 2 of my kids and I both have a genetic disorder. There is no one doctor who specializes in it because it spans a lot of different areas, not just one. And even in the areas we need to treat, just about no one has heard of it. It's very frustrating.

amother

Caramel

Thu, May 04 2023, 8:06 pm

amother Saddlebrown wrote:

I get you. Anyone else have a child diagnosed with Klinefelter ?
I searched imamother and it hasn’t come up.
It’s so hard because nobody knows besides my husband and I and the dr.

I highly recommend joining facebook just to access the groups. If you don’t want people to know, make an account with a fake name. The resources, knowledge and support you get from fellow parents in the same boat is invaluable.

Here’s one that might be good for you https://m.facebook.com/groups/.....8569/

amother

Peach

Thu, May 04 2023, 8:33 pm

I can totally relate.

amother

Taupe

Thu, May 04 2023, 9:17 pm

amother Peach wrote:

I can totally relate.

me too

amother

Bottlebrush

Thu, May 04 2023, 9:20 pm

I can very much relate as well

amother

Taupe

Thu, May 04 2023, 9:20 pm

amother Saddlebrown wrote:

I get you. Anyone else have a child diagnosed with Klinefelter ?
I searched imamother and it hasn’t come up.
It’s so hard because nobody knows besides my husband and I and the dr.

I think I know someone with this diagnosis
I can try to find out.
A good resource is Goldie turner- she has a database of people with rare diseases. She may have a match.
You can also email twacholder@agudah.org. She may be able to help too

amother

Seafoam

Thu, May 04 2023, 9:46 pm

I can relate too. Our child has Usher syndrome. It is hard to find anyone else to connect to....

amother

Seafoam

Thu, May 04 2023, 9:47 pm

I get too sad when I think about the future...

amother

Taupe

Thu, May 04 2023, 10:02 pm

amother Seafoam wrote:

I get too sad when I think about the future...

I can’t

amother

Peach

Thu, May 04 2023, 10:10 pm

Anyone here with a fatty acid oxidation disorder diagnosed through newborn screening program?

anony

Thu, May 04 2023, 10:16 pm

amother OP wrote:

Yes, it's hard enough that the professionals have never heard of this condition. But it's harder still when you feel you cant share it with anyone.

Is there something keeping you from sharing with other people? Maybe it would help you feel better if you unload? Is this internal pressure (you don’t feel comfortable sharing) or because of some other reason? (Either is valid, just wondering if there’s a way to help ease your burden).

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