Letter to US magazine regarding AVM awareness and Kate Middleton

No no Suzy, you didn’t make me mad. It’s the nonchalent attitude of that journalist that did! There’s just so little knowledge of this condition and no one is allowed to blow it off as something simple unless it’s one of us. No one else an possibly understand!

What a great opportunity to get the word out about AVMs! Although our anger shouldn’t be directed at US Magazine, it is a good opportunity to get the word out. It also looks like The Daily Mail is involved in this, too, which could be another letter to the editor :slight_smile:







"As a child, the Duchess had ‘a very serious operation,’ officials told the Daily Mail"



So the officials who knew about Kate’s childhood operation said it was “serious”, then in the next sentence, our scurrilous doctor says:



"I really doubt it was any serious condition…"



And FYI, he’s a vascular surgeon…

Nicole, do you want me to add your name to the letter?

Oh yeah, please do!!

how can they say an avm is not a serious condition when my sons avm ruptured he was very lucky to survive it he has been through brain surgery ro remove it he is now classed as epileptic AN AVM IS NOT A MINOR CONDITION BUT A RARE AND SERIOUS ONE which needs more awareness, If you haven’t sent the letter yet please feel free to use our names

Will do Sam. Letter is going out on the 18th and I will post it before I send it. Hang in there and thanks for responding.

Please use my name. It is Erin Hurley and I’m from Las Vegas,NV.

Will do Erin. Thank you and I hope you’re doing well. :slight_smile:

That infuriates me. I agree with Kimberly. My husbands AVM was June 8, 2008 & we are still constantly seeing doctors, seeing psychologists, & having various tests

June 15,2008 he had embolization for the AVM.

Does this doctor know the after effects of going into someone’s 'BRAIN"?



I’ve had many “BIRTHMARKS” removed, & it was nothing like my husbands “EMBOLIZATION”.

SHORT TERM MEMORY
CAN’T WORK ( HE OWNED HIS OWN CAR BUSINESS FOR YEARS)
WE CAN’T LIVE LIKE HUSBAND & WIFE
SENSE OF TASTE TAKEN AWAY
JUST A FEW DEFECITS FROM EMBOLIZATION.

Thank you

Joyce Pellegrino John’s wife

Hi Joyce,
Sorry to hear about all that you and your husband have gone through because the AVM. I’d like to include both your name and your comments on the letter I will send on the 18th if I have your permission. Know that you are in no way obliged to participate if you don’t want to. No judgement and you owe me no explanation. I doubt that it will change anything the way that tabloids report but at least we can try to get some awareness out there so people on all sides become more knowledgeable and hopefully, this won’t continue. Best wishes to both you and your husband no matter how you respond. :slight_smile:

Please do. Just today, November 8,2011, I was crying to one of my daughter’s telling her about her dad’s visit with his primary.
My head spins from all the different things doctors tell me. Yesterday we were told by John’s primary that he is depressed & should be on something. John’s psychiarist says he is having mood swings & has him on depakote.
We see a urologist in December for his ED problem. Never had that before his embolization.

Sunday we saw our granddaughter in a cheerleeding competion. My daughter had to buy ear plugs for her dad because he can’t be around noise.

Please by all means use my name & my husbands.

They have every kind of walks for the cause, but none here in or around the Philadelphia area.

Thank you again Joyce Pellegrino & John husband

Thank you Joyce! If it helps in any way, depression and mood swings are very common with brain surgery from what I’ve learned here. He can probably only benefit from medications that help with depression. But, it’s completely understandable to feel the way you do. You both have been through so much. There are over 3000 members on here and you can lean on us everytime you need to and know you’re not alone in this. It has been my experience that most on here are completely non-judgemental and just want to help. In addition, if you ever want to learn more or just ask questions feel free! There are resources on here as well as informative discussions and blogs that are full of personal experience you can benefit from as well. Hang in there and best of luck to both you and your husband on this journey!

Well written. I hope your letter gets some deserved attention. I have had to explain what an AVM is to medical providers so you were very accurate in saying unless specialized in it most providers don't know much about it.

Thanks for doing this and helping to raise awareness for us all!

Thank you, I appreciate you listening to me :) It gets very lonely.

Joyce

Thanks Holly :slight_smile: can I use your name?

Absolutely. Holly Crocker, Plymouth, MA, USA

Anything to help raise awareness. <3

You are not alone in this. Perhaps if you choose to you can join the group Northeast on this site to talk to other folks in your region. Also, if you ever need a laugh, there is a humor group too that you can join. It always makes me smile. Your husband might like it as well. Like I said hang in there Joyce and stay as positive as you can it can only help you and your husband. We got your back. :) OK, I'll stop talking...lol.

Please use my name emma moffatt , Dublin. Ireland. This birthmark changed my life and others in seconds . Fair play to you and thanks

Hi emmam,
Sorry you're going through this Emma, this is a great site as you probably already found out and if you ever need to lean whether that means learning more or finding others going through a similar journey or whatever you need, we're all right here and we got your back. Hope things improve for you and stay as positive as you can. (It really helps). Oh, and I'll be happy to add your name to the letter. Thanks for that and hang in there!

That is crazy!! And to think that the princess has gone through what we have gone through.