I want to get to the point before I dive into the anecdote that spawned this idea. I was wondering if anybody out there was interested in meeting monthly on zoom to talk about their AVM and their symptoms/lives/conditions. A dear family friend told me how her husband had an autoimmune disorder that impacted his eye, causing him to lose his vision. She and her husband attended monthly meetings where people discussed their own lives and treatments for 13 years until they discovered Botox injections in the eyelid seemed to do the trick.
I’m not saying we’ll come up with much, but I’ve been upset at the notion that they don’t what cause these things to rupture. I’ve wondered “will I be woken up from my sleep again from another god awful headache?” I know that I can literally be smitten right after I write this given the nature of AVM, but I have a feeling that we are stronger when we come together and discuss the treatment we all receive.
I would certainly be willing to “meet” via zoom and have a chat for sure. It may be hard to line up a time for our friends in other continents. We do have a ton of experience here and while all different do share a lot in common as well. I was a Grade 2 and had GK back in 2016. John.
Equally, depending on the time of day, as John says, I’m happy to help set up the meeting so that it doesn’t have to come from someone’s personal account.
If people are interested in a virtual meet, reply below. Once we’ve got enough to meet, we can work out a day & time.
I do a once Month meeting with TAAF, so I would be down to meet as long as it’s not the same and day/time. TAAF does three different groups because of the time zone differences, I will say gear idea, mainly because there is something knowing others have experienced it too, like a “you are not alone” I had someone say it best, “I’m glad to meet you but sorry you had to go through this!”
If there’s very little take up here, you may be as well to join one of the TAAF Online Support Groups. There are other organisations as well who run online Zoom-type support sessions.
I’d love it if you helped set it up! I’m sorry that it took a week to respond - It seems like we have a lot of people that at least viewed the post! I do want to include as many people as possible, so why don’t we brainstorm that. I like what the TAAF does where they have 3 meeting days a month. I haven’t been able to make those yet because school would interfere, but I have time now since I’m taking the semester off.
It’s my turn to be busy for the next 10 days! Very unhelpful
Choose a couple of dates and times and let us know what works for you. If you want me to join, it’ll need to start by 5pm EDT! Pick a date next week and a date the week after, maybe one the week after that as well. If 5pm is just too early, maybe @JD12 can be your host.
People should reply to this conversation if they’d like to join in. I will then add them into a private conversation so that we can share Zoom details, rather than having the meeting open to disruption from anyone on the internet.
I should be able to do it most days. Although just heading out the door to see AC/DC and then travelling tomorrow if some dates are suggested by others I can certainly adjust most of the time. I am now retired as of Friday!
That’s a good point, had some pretty strange interactions over zoom during the pandemic due to open and unmoderated rooms… Can we create a new post once I consult my calendar?
I can’t really say that its the “same” as I’ve never been, but I would much prefer that this meeting be centered towards finding a way to treat our AVMs that may not be apparent. Is this something that the TAAF meetings do? I’m very interested.
People can talk about whatever usually at these meetings unless there is a guest speaker. There is also a what’s app group I know of for the internationals not sure what they use in the states if it’s the same thing, but I’ve had so many questions answered through them and haven’t felt judged at all with has been huge to me. I also send articles through there (WhatsApp) that are on treatments coming up hopefully, AVM’s are such a rare disease and there are limited treatment options, if you want just treatment options I would be interested too in meeting. If you want to check out TAFF you can their website is taffonline.org, I know just doing TAAF brings up the Texas Athletic Association thing and the Asian American thing, just FYI I did that when I started LOL! And did it again yesterday with a Dutch friend from the Netherlands. It’s nice at meetings you can turn off your cages or on, same with audio if you’re not comfortable talking. And you get assigned a brain buddy, someone similar to your story you can talk too or yell if need be, it’s a great resource there! This community is Great too, so much and specifically AVM’s only, TAAF is the aneurysm and AVM Foundation so you get both rare diseases. Either way I’m glad to glad to have both!
Love the idea and have thought about this for so long.