AVM Awareness - Letter sent to US Weekly magazine (last post I promise)

Here is the letter I sent today to ■■■■■■■■■■■■■■■■■■■■■■ at 3pm CST. I included several members names and comments so I wanted to post it here. No need to respond and I will post if I hear anything. If I don't hear anything back in one week, I'll send the same letter via US mail. 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 AVMSurvivors.org and there are well over three thousand five hundred 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)
James Larken Smith (Sugar Land, Texas)
Jaz Gray (Memphis, TN)
Kimberly Palmer (Rockford, IL)
Nora Nichols (Austin, Tx)
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".

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

Jaz Gray (Memphis, TN)
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.

Sincerely,

Suzy C. Epley

Ok, that email came back as a failed attempt to contact them. I went to the site and went to customer service and they had a place to contact the editor, so I included the letter there... guess they changed a few things in the last week...lol. Again, I'll post something if I hear anything. Hope everyone is as well as they can be. :) Again, no need to respond.

Mmg (maryland) good evening everyone I hope everyone is doing well. I just read the article on what was said about AVM not being a serious condition. This person needs to get reaI. I had my bleed March 2008 and I am still seening drs. Not only that but it has completly change my life. I am not like I use to be. I can not drive at night due to blindless on my left side. I am on medication that I will be on for the rest of my life. It just makes me upset when I here this. How can anyone say something about this when they haven’t walked in our shoes. My thought and prays goes out to everyone. Live love and be bless.

Please keep us updated about this......and thankyou for giving us a voice.....

Hey

I just read your letter to US Magazine and i commend you. How did you find the atricle? Let me know if there is anything i can do to help you spred the word.
Linda

Thanks for the kind words Linda. The article was brought to my attention by Jenny K Ng and Christine Peterson in posts on here (they're the first two people listed in my letter). I just wrote the letter. I sent it on Friday and still haven't heard anything yet and this is Tuesday. I promised that if a week passes and I still don't hear anything, I'll mail a hardcopy of the same letter. Thank you for your offer! Hope you're feeling well!

I think your letter was great! thank you for including me! =)

Of course…thanks for bringing it up!

Suzy, Thank you for posting this link on here as it is ridiculous what people can say some times! Even one of my good friends who is still in Medical School knows how serious they can be!
I thought i might just Google to see if there was anything about this John Scurr on there and this is what i have found. Supposedly he is a World Leading Vascular and General Surgeon. If he is a world leading Vascular surgeon that thinks AVM aren't serious then i am a rocket scientist (im really a travel agent)
http://www.jscurr.com/our-team

Wow, I read the "credentials" of John Scurr in the link you posted. I guess unless it says "specializes in AVMs" they just don't know. Guess that's what awareness is all about. The issue is that if a person doesn't know then admit that and certainly don't make a generalized comment like that (if he ever did). Sounds simple to me. Thanks again for taking the time to look him up. No I still haven't heard anything back and even though it's Thanksgiving weekend, I'm sure they would have responded if they were concerned at all. As promised, I'll send a hard copy of the same letter on Friday and if they don't respond to that we'll figure something else out. Thanks again. :)

I promised an update as soon as I heard something. Well the bad news is that I received no response to either the online statement or the letter I mailed as of today.

At the very least we tried and provided them as much awareness as we could. But the good news is that we didn't just take it and collectively responded. (Thank you for adding your names everyone...) It's a proactive response that I'm way proud of. Yes this was a tabloid and no I don't expect much else from them BUT we responded. Each and everyone should be proud as well. :) Hope everyone is feeling well.

Send it, Suzy...great job!