Final letter to US magazine re: AVM Awareness

Again, Im sending this out this Friday. I just wanted to post this letter a final time because it includes members names and comments (with their permission of course). If anyone wants to add their name or leave a comment (or both) please let me know by Friday. Hope everyone is doing well!

Dear Editor of US Weekly magazine,

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 saying he doubts it was a serious condition 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 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.

I understand that your intention is not to scare the public and put things in terms they understand but we just had to speak up.

The following members of the AVM Survivors support group want to voice their concern:

Jenny K Ng (New York, NY)
Christine Peterson (Corona, CA)
Kimberly Anderson (Durant, OK)
Beth (Grand Rapids, MI)
Jaynied (Jake’s mam) (Durham, UK)
Ron, Kansas (Wichita, KS)
Cindy Phillips (Cornelia, GA)
Ninibeth Ramirez (San Juan, Puerto Rico)
Maddysmom (Attleboro, MA)
Jake M (Aliso Viejo, CA)
Trish (Cary, NC)
Nicole R (San Diego, CA)
Sam Drummond – Luke’s mum (Manchester, UK)
Erin Hurley (Las Vegas, NV)
John (West Chester, PA)
Holly Crocker (Plymouth, MA)
Emma Moffatt (Dublin, Ireland)
DM H Sydney (Sydney, Australia)
Elspeth Pierce (London ,UK)
Suzy Epley (Leander, TX)

Some of the comments made by members on the site:
Kimberly Anderson (Durant, OK)
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.?

Jaynied (Jake’s Mam) (Durham, UK)
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…

Maddysmom (Attleboro, MA)
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 …

Jake M (Aliso Viejo, CA)
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.

Sam Drummond – Luke’s mum (Manchester, UK)
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…

John (West Chester,PA)
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".


Thank you
Joyce Pellegrino John's wife

Great letter. I appreciate that you took the time to construct this. Let's hope it raises some awareness!

Thanks Holly. We can only hope. Hope you’re doing well. :slight_smile:

You can add my name to the letter.

James Larken Smith Sugar Land, Texas

Excellent letter , Well said

Yes, great job Suzy E! This letter should be useful to the magazine for the future. The journalist who wrote the story apparently just included the quote from a source she thought was credible but failed to do any additional research into the accuracy of what the source was actually saying. I left my comments on the web page but I'll repost it edited on here just in case you want to add any of it.

Jaz Gray (Memphis, TN)
"I just want to reiterate what others have said. The doctor in the US Magazine article may try to downplay the rare but incredibly dangerous birth defect that AVM is by calling it a "birthmark," but we will not let the misinformation continue. This is the SAME misinformation that I received and that many others receive who are not as fortune as Kate. But, as someone who has had over 30 procedures, let's be clear. AVM is a serious disorder that has a life-changing effect on people's lives and quality of life. Thank God for people like my doctor James Suen (UAMS) and all the doctors around the world who are on a mission to find a cure."

Thanks for your hard-work!

~ Jaz

I'll certainly add both to the letter. Thank you again. :)

Thank you James. Your name will be added to the letter I send. :)

No problem. Thank YOU :)


Hey Suzy, sounds great, thanks for doing this from all of us

Kia Kaha


Thanks so much for taking the time to write this letter. Please add my name as well.

Kimberly Palmer, Rockford, IL

Thank you Kimberly. Your name will be added. :)

You're very welome DM. Hope you're doing well. :)