Letter to US magazine regarding AVM awareness and Kate Middleton

I haven’t sent this yet but I’d like to send this collectively after everyone has been able to add their two cents. Feel free to add or change anything and to give folks time to respond (if they want to), I’ll send this on November 18th. That gives everyone about two weeks to respond. Please read the letter, and either make changes and/or send me your name if you agree. We want to make this as simple as possible for all of you. Best wishes!

To Whom It May Concern:

In your article dated October 27th, you covered an appearance by Kate Middleton who is now married to Prince William. During the appearance she revealed a “three inch long scar on the left side of her head” which a spokesman for Kate said was “…related to a childhood operation”.

The issue is the statement by John Scurr in which it was quoted that he said “I really doubt it was any serious condition and I would say it as a result of an arteriovenous malformation – a birthmark – being removed.”

First of all an arteriovenous malformation of any kind is very serious and definitely not a birthmark. Go ahead and google it. Second it is nothing but irresponsible to let this “London-based surgeon” make a comment like that when we don’t even know what kind of surgery he performs or anything else about his credentials. I realize that it’s quite common practice to use another physician’s opinion when there’s little to no access to Kate’s doctor but an Arteriovenous Malformation (AVM) is quite rare and most doctors (unless they specialize in AVMs) usually know very little about it. Third, this comment was nothing but offensive to those currently suffering with AVMs and resulted in this letter. Our goal is not just to complain about the article but to provide AVM awareness as well.

According to Wikipedia (not even a medical reference), AVMs “…are deficiencies of the cardiovascular system. In a normal functioning human body, arteries carry oxygen-rich blood away from the heart to the rest of the body, and veins return oxygen-depleted blood to the lungs and heart. An AVM interferes with this cyclical process. Instead of the gradual transition through the capillaries from arteries to veins that is typical of normal functioning vasculature, AVMs cause direct associations of the arteries and veins. AVMs can cause intense pain and lead to serious medical problems. Although AVMs are often associated with the brain and spinal cord, they can develop in any part of the body.”

We are members of a very caring AVM support group known as AVMSurvivors.org and there are over two thousand members on this site from all over the world. Perhaps a member or two on this site can be interviewed or at least they can provide a very personal experience to help get the word out about AVMs.

I’m not saying that Kate had an AVM or even had it removed when she was a child. I have no way of knowing that and I am certainly not a doctor. However, I do have some personal experience with AVMs having had one October 2006 in my cerebellum. Maybe this is worth some further research? Maybe there is another story in there.

If this is true, that REALLY bothers me that he would even try to say that. Obviously he has NO IDEA what goes on with AVM’s. I had my bleed on July 19, 2008 and we are still taking care of it; continuous trips to the doctor, numerous MRI’s, angio-grams. Comparing an AVM to a birthmark?? Come-on… Seriously.?

More than addressing the uniformed statement regarding Kate Middleton, I hope that this will bring awareness and a brief insight to the world of those dealing with an AVM, both the individual and their loved ones who care about them as well as the medical professionals caring for them.

So can I use your name on this letter I plan to send?

Can I use your name as well?

Oh I forgot to add that the man that said it was a birthmark is claimed to be a London physician. I’lol make sure to add that to the letter I will send.

I can’t believe that somebody would just say that, with no evidence whatsoever to suggest she had an AVM!! I must say that since my son,Jake had his craniotomy last year I have become a little obsessed with head scars, can spot them a mile off, and always wonder what happened. I hadn’t noticed Kate’s however. Feel free to use my name on the letter, Jaynie

Thanks Jaynied, will do. Hope your son is doing well. :slight_smile:

Suzy, you can use mine.

I didn’t see or know about the reference, but your letter is absolutely brilliant!

I’d suggest you send it to the magazine editor and/or the journalist, rather than to whom it may concern. A simple google search should give you the names.

Geeze, I just googled Kate Middleton’s scar and there’s a gazillion links, but none I read had any more info on what it might be from. And we don’t need to know-that’s for sure. Even monarchy should have some privacy.

Sign me on,
Ron, KS

I really don’t like the ‘lime light’ but you can use my name for your article/letter if it will help you. Straighten them out, girl!!! :wink: Thank you for all you do, Suzy! (It is very much needed & appreciated here!)

It’s the least I can do Cindy. These are some awesome people. Thanks for the support and I’ll post something when I send it out. Hope you’re doing well. :slight_smile:

Yes, you can use my name.

Hi there…i am a mom of a 14 year old daughter madison who has a facial avm…however was born with the appearance of a “BIRTHMARK” on her cheek. She was properly diagnosed at 9 and now that she is in her teenage years we live with battling the avm beast daily…this makes me sick that this man would refernce that…kudos to you for fighting back :slight_smile: Send this to anyone that will listen and publish even against the magazine and new station that said it…good luck

Contrary to public opinion, let’s not make mountains out of mole hills. US magazine is TABLOID, so if u want to start calling them on bogus information, you’ve got ur hands full! While I don’t agree with trivializing an AVM, remember all avms are different. Simply categorizing them as birthmarks, is a true statement yet, very simplified. I imagine there are some survivors who had surperficial asymptomatic avms that would also call them ‘birthmarks’. Describing an avm as a birthmark is not meant to insult us, but instead to describe it in a way that the general public can understand and NOT freak out about. Most importantly…consider the source! An alleged British ‘doctor’? A major news TABLOID? Sounds like a lot of hype over nothing. Just my opinion, do what u will. Kate middleton could have fallen as a child and knocked her head on the fireplace for all we know?! Now if Kate DID have an avm resected as a child, what a great spokesperson for our cause! Just my two cents… -GK

I agree with you that describing an AVM as a birthmark is probably more palatable by the public. However, saying that an AVM was probably not a “serious condition” is irresposible if not downright hurtful to many people. It’s saying that an AVM is not serious is the real issue. (I will definitely add that to the letter because that is the main point and it’s not in there anywhere). No, we don’t know whether Kate Middleton ever had a childhood AVM removed and we probably never will. Plus, even if she did, she will probably never discuss it. Yes US weekly is a tabloid, but the celebrity media covered it and it was first brought up by Jenny K Ng in another magazine and then by Christine Peterson in US Weekly. I would have never brought it to light if it weren’t for US weekly covering it which has a huge following. The whole goal here is awareness and even if they don’t respond at least we tried. Here’s an idea, perhaps they don’t want to “freak out” people as you say but maybe they can make a quiet contribution to the cause. Just a thought. And Greg, your two cents are always valued. :slight_smile: Thank you for responding.

Yeah… The surgery to remove the “birthmark” from deep inside my left temporal lobe left me half blind, on medication for the rest of my life in order to prevent seizures, and still dealing with the stress of dealing with my “birthmark” for the last 10 years. The author oviously does not know what he/she is talking about, and either completely misunderstood what the surgeon said during the itnerview, or the surgeon obviously does not specialize in AVMs.

Phew! Good to know that my AVM (and subsequent bleed, permanent disability, etc.) was nothing more serious than a simple birthmark! And here I’ve lost half of my vision, have permanent vertigo, and will probably never work again all because of this silly little birthmark! If only I’d have known it was just a simple birthmark, I would never have allowed it to change my life and the lives of my family forever! I would love to hear if this very reputable publication responds to your letter! And, yes, you may most certainly use my name, age, race, whatever else you wish! Good for you Suzy!

Didn’t mean to make you or others mad (I really didn’t…didn’t even think about that but it’s certainly understandable). There’s a link to the article at: http://www.usmagazine.com/celebritynews/news/pic-kate-middleton-reveals-three-inch-scar-on-forehead-20112710 that Christine posted and then another related article that Jenny posted in another magazine at: http://www.inquisitr.com/154653/kate-middleton-reveals-scar (they’re in the blogs). There is a place to add a comment if you scroll down in the US Weekly article and the list of responses seems to be growing daily. In addition to the comments, I plan to send the letter to include the names of concerned members and I’ll be sure to add yours as well. Hope your doing well!

If you like I can add your comments above to the letter I’m sending. Only with your permission of course. If you don’t wan’t to make your answer public, you can send me an email at ■■■■■■■■■■■■■■■■■■■. Hope you doing as well as can be! Take good care of yourself.