Is anyone in the group of African descent ? It doesn't seem like something African Americans have often

I’m just being curious again. I don’t see all pictures because some are grayed out. I am African American. This doesn’t seem to be a condition that affects most African Americans. When I read about it, it states that it doesn’t affect any one group more than the other. That doesn’t seem to be true when I look at the site. My cousin worked for the doctor that is going to perform my surgery and she said they have a few African Americans, but not many. I know my family is missed with various blood. My Mom is a lighter brown than I am with a face full of freckles. I know that isn’t an African trait. So I can imagine why it got to me if it is a condition that doesn’t usually affect African Americans. As I said, I’m just curious is anyone else here of African descent.

Peace,
Ameenah

Ameena I wonder if they just don’t know about the site. Whare I am in Maryland I cant find any support groups for AVMs,anyone here looking wouldn’t know whare to go.My state has a mix of all races.It’s sad to know people are out there without a place to go like this. I need to give the name of this site to them at the center whare I got my Cyberknife done.

Ameenah,
When I was in rehab following my surgery, there was one African American patient that had had an AVM. But like Pauline said, I bet there aren’t many people out there that even know this site exists. It wasn’t something that the rehab hospital told me about. It’s only because I’m part of a case study of relatives with AVMs that I even found it. The hospital that is doing the study sent me a brochure on the AVM walk and when I went to that site, I fumbled upon this one. I do intend to tell the rehab hospital about this site as it has been of so much help to me.

Thanks, I’m just curious. I live on the internet so I guess I’m sure to find everything.LOL

If I had to guess, I’d say that the demographics of the areas represented here on this site (primarily United States, Canada, Australia and Europe) happen to line up fairly evenly with the number of people that have been diagnosed with AVMs in the area. If this site were based in Asia, India, Africa, South America, etc.) and was written in a language other than Enlish, we’d probably be more likely to see things change. For example, while there are certainly white people living in China, I would imagine that a Chinese language AVM site would have a lot more people of Asian descent than of white ancestry. While US, Canada, Australia and European countries have diverse populations, most of these areas still have a larger white population.

Aside from race/ethnicity, have you happened to notice the age ranges of people on this site? There’s a wide spread, but it seems as though a significant majority of the people on here are between the ages of 20 and 40. It could have something to do with the the age at which AVMs start being diagnosed, or it could be due to the fact that more people between 20-40 spend time online than say 8 year olds and 80 year olds. Not just that, but there also seem to be more females. It COULD be due to womens being more likely to have AVMs, but my guess is that men are less likely to talk about health problems.

I’m not great at math, but the percentage of African decscent people vs. other races and then the percent of people who have avm’s, in general, take that by the percent of people who know about this site could explain the low numbers. I spoke with doctors who have practiced for 30 years and never had a patient with an avm. So numbers are low in general. That’s my bit of B.S. there is no scienitfic bases to any of this.

I was sorta thinking along the same lines as Jake. Wonderfing if there would be a cultural reason that there aren’t many African Americans on the board. I don’t know what that would be, and was having a hard time coming up with one!!! :slight_smile: I was kinda thinking that black families are sometimes large and very involved with each other and with another community like church. So maybe that could account for the lack of a “need” to find a support group. Like they already had a ton of people supporting them and weren’t looking for others. I don’t know. Just a thought.

Everything I have read seems to support that AVM’s are equal opportunity nuisances!!! But I also agree with Jake that there are quite a few ladies on the board. But also that as much as I hate to stereotype, we girls are more open to talking about health and our “feelings” and such.

I’ve also noticed there seem to be quite a few people from Australia/New Zealand. And wondered if there was a higher percentage over there. Or maybe I just notice when people are from that area because I’m secretly jealous and want to live there! LOL!

Thanks Jake, Janice and Shalon. I’m 50 and I do believe I’ve been having problems for a long time and I shrugged them off or was misdiagnosed when I went for treatment. Jake the demographics probably have a lot to do with it. Okay, I can’t blame my freckled face Mom. LOL LOL
Maybe it is just the people who are on the internet or like Shalon said, normally would an African American seek out people on the internet for a problem such as this. I guess so, I did LOL. As I said before, just curious:)

Peace,
Ameenah

Hi Ameenah. My husband is of african descent. He is from the caribbean coast of Costa Rica, grandparents were from Jamaica. AVM was removed by surgery 2 yeas ago. He had just arrived in this country 3 weeks when he had a seizure and thus the AVM discovered. Talk about lucky…but how terrifying for him to deal with being in a new country and then boom…and AVM.

Thanks so much Kat, I guess this thing is just something that could happen to anyone. I just happen to have this rare thing and mine happens to be in the posterior fossa, more rare.
How is your husband doing since surgery ?? He was lucky!!!

Peace,
Ameenah