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Anyone have a child with MYH9 mutation?
- abrown93
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He's been asymptomatic for the past six years other than mild bruising every now and then ( never bleeding or clotting issues even though he's had falls/broken arm etc). He also has some high tone hearing loss and wears hearing aids as a result.
I'd love to hear from anyone that has a child with a MYH9 disorder,not ITP (if any exist in this forum).
My son is now 6 years old and we're struggling with whether it's appropriate for him to play contact sports such as soccer and baseball ( never football, lacrosse, rugby). His platelets are large and well functioning but in the <20K range consistently. I don't want to deny him his desire to play with his friends if he has never had a bleeding issue.
We're also concerned about the probability of his disorder causing progressive hearing loss, cataracts, or kidney issues.
Would love to hear from somebody that has or is a parent of a child with a MYH9 disorder.
Thank you in advance,
Allison
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- Ann
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There is a register for these sorts of thrombocytopenia. They tend to call them familial as there is usually more than one family member with it but that doesn't have to be the case as it has to start somewhere.
ukitpregistry.com/TheRegistries/Familial/FamilialITPRegistry.html
Your son's platelet count is lower than usual for this disorder. Has it been manually counted as the machines aren't good at counting large platelets? But let's hope his count rises a bit in the coming years.
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- Twinky
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For sure no contact sports. We are in the process of finding a Dr with answers. Our current one just keeps pushing us away. I would love to chat more!
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- Twinky
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- Lilvick30
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- pinkdaisy024
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- teamkalvin2006
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- Linda_Berlin
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my son has MYH9 too. He is sweet 8 weeks old.
Now I started creating a website to collect all information. Especially from parents and MYH9-patients.
Are you interested in joining me?
If you send me an mail with your story and/or your information about MYH9, I will publish it there.
The website is: www.myh9.jimdo.com/
E-Mail: myh9@gmx.de
Thanks
Linda
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- Annie77
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- I was diagnosed with Myh9. In 2001 had kidney transplant
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