Does anyone else with AVM have tons of birthmarks as well?

My daughter was born with tons of birthmarks. When she was just a baby they had to test her birthmarks to make sure she wasn't having kidney or liver problems. They never did figure out why she had all these birthmarks. Well now all these years later we find out she has AVM as well and that the birthmarks are probably related. We counted her birthmarks and there were 43 all together. They are all pretty much spread out. Well now this year we have noticed that 3 of the birthmarks are raising above the skin and actually growing. Her doctor did an angiogram on them today and couldn't see any veins in them but they sure look like they would have them. A couple weeks before the 4th of July we also noticed that she now has a blister on the inside of her bottom lip. It almost looks like a wart but the doctor says its not and referred her to a dermatologist to have them all looked at so now we sit and play the waiting game once again. I was just wondering if there is anyone else out there with the same thing that has AVM as well.

Hi, Elizabeth, if you type "birthmark" in the search box, you will soon see that many members have birthmarks related to their AVMs. If you take photos of your daughter's birthmarks and make a photo album on this site, it may help you get information from other members; for example, I could direct you to other members with similar photos. Also, you can give doctors the link to the album as you get consults.

CM/AVM Syndrome could cause a lot of birthmarks; it is caused by a mutation in the RASA1 gene, and can be passed on to one's children. HHT causes telngiectasias, which are very small, reddish dots mostly found on the face. This new information convinces me more than ever that your daughter needs a real expert in vascular anomalies. If the birthmarks are very superficial, it is possible they can be treated with laser so that they never become symptomatic. Keep asking questions; it will help you get the best treatment.

Thanks dancermom, I keep thinking that I am just worrying too much but I still feel like there is something connecting everything in some way. I just posted some pics up of some of the birthmarks. The big brownish looking one is what most of her birthmarks look like except they are much smaller but same in color…the rest of the birthmarks that I posted are the ones that are actually growing and rising above the skin now. I also posted a pic of the blister that has formed on her lip about two months ago. The last couple pics are of her left foot that contains the AVM. Anyways, thanks again, I am researching everything that you keep telling me about and I am trying to find a way to get genetic testing done on her because the way her doctor sounds, I don’t think he will send her for it at this point so I will have to try and find a way around that.

The big brown birthmark is the cafe au lait. Cafe au laits are common and generally considered harmless. But cafe au laits can be a sign of a disease called neurofibromatosis: "Six or more cafe au lait macules greater than 5 mm in greatest diameter in prepubertal individuals or >15 mm in greatest diameter after puberty" may indicate neurofibromatosis.

Growing and rising during adolescence is typical for moles (nevi), but moles are most often darker and smaller than your photos, so I'm not sure what's going on. I definitely think you should pay a visit to the Vascular Birthmark Foundation (, take a look at the panel of VBF experts on the left side of the page, and start emailing questions and photos.

You are doing a great job advocating for your daughter!

I should also mention a couple of other things. Neurofibromatosis is a disease that has "variable expression," meaning some cases are very mild and others severe. So please don't frighten yourself by looking at Internet photos before you see a doctor who really knows birthmarks. It is possible the salmon patch birthmarks may be neurofibromas, but only an experienced doctor can judge that.

Also, I looked up cafe au lait on wikipedia, and there is a host of other conditions that can cause multiple cafe au laits, some of them harmless:

So please don't worry, but find your way to a doctor who will work with you to figure things out.

One more note: I did find some articles indicating that AVMs are sometimes a manifestation of neurofibromatosis. Here's one:

Here is another resource to find a good doctor:

This is useful, too:

Wow all of these have been very helpful, I just sent an email to one of the doctors, hopefully he can help me. Thank you for all your help dancermom you are awesome!!! I definitely plan on having genetic testing done on her now. I will keep you updated :)