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Forum
-> Children's Health
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amother
OP
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 Tue, Feb 28 2023, 2:31 pm
2/29/24 bumping for rare disease day today!
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*old thread Warning*
I bumped up this thread as I’m trying to help a friend with a new dx
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Say hi if you’re a mom to a child with a rare disease!
(And if comfortable to post which disease)
🦓🦓🦓🦓🦓🦓
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amother
Darkblue
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Tue, Feb 28 2023, 2:37 pm
Hi! You know who I am 
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amother
Lemonlime
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Tue, Feb 28 2023, 2:37 pm
My child has a learning disorder that nobody can pinpoint, nor anyone has find a method to help her. Lots of tutoring and money,for barely any progress.
Does that count?
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amother
Stoneblue
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Tue, Feb 28 2023, 2:38 pm
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Hi
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amother
Tealblue
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Tue, Feb 28 2023, 2:39 pm
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I have a rare disease - according to the CDC. Wasn't diagnosed until my 30's and suffered my whole life with it...
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amother
OP
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Tue, Feb 28 2023, 2:40 pm
| amother Lemonlime wrote: | My child has a learning disorder that nobody can pinpoint, nor anyone has find a method to help her. Lots of tutoring and money,for barely any progress.
Does that count? |
Hugs ❤️ that’s so hard to see a child struggling like that (plus your struggle too!) Hashem should help your dc and you find the answers you speak and learning should come easily.
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amother
Grape
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Tue, Feb 28 2023, 2:41 pm
| amother Lemonlime wrote: | My child has a learning disorder that nobody can pinpoint, nor anyone has find a method to help her. Lots of tutoring and money,for barely any progress.
Does that count? |
Mine too. She’s in high school. Socially she’s up to par so she’s struggling so much to try to keep up with everyone. Her worst fear is that she will be embarrassed in front of her teachers and classmates for not knowing an answer. The academic pressure is a nightmare.
But it’s not a disease … it’s a different type of challenge
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amother
IndianRed
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Tue, Feb 28 2023, 2:42 pm
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I have a rare disease. Took me 2 years of running to doctors to figure out what's going on.
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amother
OP
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Tue, Feb 28 2023, 2:42 pm
| amother Tealblue wrote: | | I have a rare disease - according to the CDC. Wasn't diagnosed until my 30's and suffered my whole life with it... |
I’m happy you got your diagnosis, but suffering without answers is in my opinion the worst...
I hope that now that you have a dx you at least have treatment/relief etc.
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amother
Junglegreen
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Tue, Feb 28 2023, 2:45 pm
I think it might not be so rare anymore unfortunately. But I'm a PANS mom. (Yes. Not I have a child with PANS. But in a PANS mom. Becuase it takes over everything un live. Day and night. All day. Every day. Now that my child is 75% back to baseline were starting to have a life but gosh it has been a heck of a 5 years!
I hate what the disease has done to my child and my family. But I love my child.
Hello!
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amother
Crocus
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Tue, Feb 28 2023, 2:47 pm
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I had ramsey hunt syndrome. BH I recovered.
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amother
Tealblue
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Tue, Feb 28 2023, 2:48 pm
| amother OP wrote: | I’m happy you got your diagnosis, but suffering without answers is in my opinion the worst...
I hope that now that you have a dx you at least have treatment/relief etc. |
had surgery but it only helps for a few years and isn't a complete fix. Symptoms still change my life and what I can do. Likely looking at more surgeries going forward. It's scary, I hated surgery and recovery, and don't want to go through it again.
A super rare disease is hard. There aren't many people in the world who have this, it's lonely and also complicates treatment because there's only 1 surgeon who actually has a decent amount of experience doing surgery for it. I can't talk about it and have anonymity.
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amother
Peachpuff
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Tue, Feb 28 2023, 2:51 pm
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Not a rare type but there are no clear cut ways to treat. My child has lyme, and rocky mountain spotty fever
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amother
Grape
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Tue, Feb 28 2023, 2:58 pm
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I think I have gouchers disease but I have never been tested.
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amother
Sapphire
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Tue, Feb 28 2023, 3:07 pm
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My child has gauchers disease - to poster above please get tested!!!!
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amother
Dahlia
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Tue, Feb 28 2023, 3:55 pm
My husband and I are carriers of a rare disease. Rare enough that there's barely any information on it and my pediatrician was unable to get information even from the genetics department at the local children's hospital (one of the best in the country).
We need IVF with PGD to conceive. B"H our children are fine and beautiful but it's been a rough ride.
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amother
Darkblue
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Tue, Feb 28 2023, 3:57 pm
| amother Dahlia wrote: | My husband and I are carriers of a rare disease. Rare enough that there's barely any information on it and my pediatrician was unable to get information even from the genetics department at the local children's hospital (one of the best in the country).
We need IVF with PGD to conceive. B"H our children are fine and beautiful but it's been a rough ride. | How did you find out? Usually the super rare ones are not on any panels or screenings.
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amother
Dahlia
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Tue, Feb 28 2023, 4:00 pm
| amother Darkblue wrote: | | How did you find out? Usually the super rare ones are not on any panels or screenings. |
Thankfully we were doing fertility treatment! We did the extended panel that covers many diseases. It catapulted us straight into IVF.
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amother
Darkblue
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Tue, Feb 28 2023, 4:04 pm
| amother Dahlia wrote: | | Thankfully we were doing fertility treatment! We did the extended panel that covers many diseases. It catapulted us straight into IVF. | I'm surprised it was in a panel at all if it's that rare. I guess lucky for you.
I found out I'm a carrier of a rare disease after I already had a child with it.
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