Hey, you can use my name Donna-Marie Harris Sydney Australia
My so called BIRTHMARK has left me having seizures, confusion, can't write properly because I have no feeling in my thumb and finger, and daily pain. I am one of the very lucky AVM survivors and are very thankful with my miner side affects of my BIRTHMARK.
Thanks for writing this letter and trying to raise awareness of this very rear and dangerous condition.
Kia Kaha
DM
I have just joined This site and had a bleed in 2008 and I don’t get offended by much but this belittles all the pain and treatment and fear that me and my family have beenthroigh since I had a bleed in 2009. I think this letter is good and I would definitely put my name to it and also I would definitely be interviewed if you were looking for anyone. Thanks elspeth x
I have had a bleed, open surgery, embolisation , gamma knife surgery and then a stroke all at the age of 23 and all because of this ‘not serious’ thing called and avm. I now am half blind in one eye and can never drive again. This person needs to do some research.
I do however think I’m a very lucky girl and to turn it into a positive would be to give people awareness about it. Well done Suzy.
Feel free!
Hey me again just letting u know that I went on the links you put up to read what was written in the mags and I have also left a comment on both of them
DM
Suzy -- I commend your diligence in pursuing getting the air cleared
on this matter. Any physician wirth his salt knows an AVM is nowhere
anything like a birthmark. The maginitude of ignorance in the media
is clearly astounding. The fact that people read the articles and attribute
any veracity to them is even more frightful. I fully support your
impressing on this group from the magazine how egregious their reporting is
and how much damage can be caused by erroneous reporting. Thank You in advance
for having caught this bad example of journalism. And should the Duchess of Cambridge
really have had an AVM, I would hope any possible or potential contact
which could be made with her to support the Endeavor of AVM research and treatment, and
support would be truly worthwhile. Thanks again for your dedication.
Thank you for your kind words Nora, but I didn't catch "this bad example of journalism", two other people did. It was pointed out to me from a post by Jenny K Ng and then another by Christine Peterson. Nonetheless, it is nothing but irresponsible and deserves attention. I just wrote the letter. :) It sounds like you support the letter but I have to ask, do you want me to include your name on the letter I send tomorrow? I'll be happy to do so but I need your permission. Wishing you the best always and thank you again.
Yes Suzy - feel free to use my name. It is
pretty important that the media get it right.