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Anyone with Aspirin-Like Defect platelet disorder?

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9 years 2 months ago #48457 by TimeToMoveOn
Hello,
I'm a 39 yr old woman who was recently diagnosed with the platelet disorder Aspirin-like Defect. 2 weeks ago my 5 year old daughter received the same diagnosis. We have been told this condition is quite rare, and I'd love to connect with others who have this, or whose children have it... provided there are any others out there? Somewhere? ;) Or anyone who has a similar platelet disorder? Or is there another forum that exists somewhere for people with bleeding/platelet issues other than ITP or hemophilia? (Among many other things) I feel frustrated by the fact that there is no cure for this, and or even a real treatment. We are given Stimate, which may or may not be effective. Also, my daughter has anaphylactic food allergies, and I wondered if these conditions could be somehow related?
Thanks for reading, and thanks in advance if anyone is so inclined to write.
Cheers!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 2 months ago - 9 years 2 months ago #48462 by Sandi
I have never seen anyone here with Aspirin Like Defect Platelet Disorder, so I don't think you will get any responses.

Maybe these can help you:


www.patientslikeme.com/

www.rarediseases.org/

www.bensfriends.org/

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9 years 2 months ago #48471 by
Didn't know there were 2 of these threads. I did respond in the one in the adult section - but that I didn't know what it was and had to look it up.

Will check out your links Sandi, thanks.

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6 years 3 months ago #63118 by Tam
I know this is an old thread but my son also has this condition. Have you found any more on it ? My son also may have a connective tissue disorder and just interested in knowing what your other symptoms or diagnosed health conditions Thankyou

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