June is cavernous angioma awareness month

Discussions about the illness, treatments, doctors, etc.

June is cavernous angioma awareness month

Postby joanncooper » Thu May 25, 2017 8:30 pm

Is there anything that we can send to our friends and family to help them understand about our disease? I always get the "but you look like there is nothing wrong" statement. I am thankful that they cannot tell on the outside, but I would like for them to understand more about the challenges after bleeds that doesn't always show on the outside.

I saved this website to help explain how I feel that might help others, but it's not specific to our disease.
https://www.youtube.com/watch?v=LnRpuEEPDuc

I was also thinking about reaching out to our local news media, but I don't know what to provide to them. There is no way that I could go on TV...not something that I can handle, but I would like to give them something to talk about. We have a lot of giving people from my city and I would love to get the word out.

Thanks!
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Re: June is cavernous angioma awareness month

Postby lesliemarie21 » Sun May 28, 2017 10:03 pm

Hi! I am newly diagnosed and am still learning daily about my/our disease, but I am definitely not shy and would be willing to speak openly about the issues we deal with and face. If I can help in anyway, I really would love to.. I spent years being put down and made fun of.. I was called lazy, etc for not being able to keep up.. I was called "princess sleep a lot" by my ex mother in law b/c I needed naps due to my absence seizures (which I didn't know I was having) wearing me out.. I'm in the military and have been for 10 years and I can tell you it's been a ROUGH road living with this illness NOT knowing what was wrong.. We look perfectly healthy... but on the inside we are not..

Anyway, I would love to help. Please let me know if I an do something. Thank you!

Leslie
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Re: June is cavernous angioma awareness month

Postby Michelle2000 » Sat Jun 03, 2017 4:17 am

Stephanie Alband would be the person at Angioma Alliance able to help you with this.
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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