As a second-generation aneurysm-rupture survivor, I’d like to surface a thread for us – knowing this isn’t an immediately important for a recent survivor or a family member.
That said, are there any registries or studies looking at hereditary aneurysm development and/or the blood and vascular issues that may be tied to it? Can we build a database for this? Post rupture, I was diagnosed with Factor 5 and 7 mutations. Anyone else? Is there a study that is looking at this?
I’ve worked in hospital communications for more than 15 years, and the survivors don’t have a strong voice. I want to make sure we can (and other families can) ensure that our experiences help inform research and knowledge into what caused our initial aneurysms.
Contact The Bee Foundation. Dr. Quintero-Wolfe was awarded a grant a few years back that she was very excited about and would work with some other Universities, one in TX. She has a strong interest in genetics for aneurysms and AVMs. I can’t remember the details but it had to do with an Anthropologist in Greece maybe that discovered some type of gene. I’m not sure what the BF is doing or the Joe Niekro Foundation. There’s also the Foundaton in NY named after a report Lisa (can’t remember her last name I think it stars with a C). You could also go to the NIH and see if you can find anything there.
I have no problems with having a database for research being done. But it may be something we need to ask the more important folks with @ModSupport as someone from Ben’s Friends may have to ask someone from the BAF.
After 2 aunts, an uncle, great-grandfather and grandmother passed from aneurysms and/or dissections, our family has been tested and thought to be linked to one specific gene mutation but recently discovered to have multiple genes within our family. I assumed since my mom hit her 70s that our line was in the clear and then my teenage son was diagnosed after my mom’s recent giant ICA annie was discovered. His pediatrician ordered an ARUP Labs, aortopathy gene panel that tests nearly every related gene mutation that causes aneurysms and this has helped us piece together our familial causes so that we can continue to get preventative scans and such for hopefully extending life. It’s been quite a trip but there are some great genetic databases already tracking all of this. Hopecthat helps!
From memory (and my memory leaks like a sieve) I seem to remember some policy in regard survey/trials etc. I cannot remember the details. As Richard is unavailable at present, I’ll forward a msg to Ben, he may know more. I know this was a while ago, years ago, and the policy may have changed since.
Yes, I remember the same but I think that’s not what’s being asked, definitely not a survey, but some research could fall into the trials category. I took the old rule to mean there couldn’t be researchers asking for members to join trials or surveys.
We definitely don’t want researchers joining and recruiting from in here. However, it is perfectly good, if there is research output to link to that research output.
The objective of this community is to be a peer-to-peer support space. What we want to avoid is getting into the space where professionals are in here trying to direct people to their neurovascular surgery practices, to sign up to trials, to use their pharmaceutical products, etc. It starts to get commercial and becomes a completely different place.
And that’s exactly why I asked Ben. I don’t know the full details either, it could or it could not. I don’t want to be risking any prior relationship (BAF) by putting others wrong by getting the details wrong.
I’m assuming Merl is engaging with Ben and possibly Mark. Both have been in contact with BAF recently, so hold that relationship (not me!).
And I’m afraid my focus currently is on my mum, who has dementia but has also been prescribed new meds about 4 weeks ago in which I’ve been doing 4½ hourly doses for her through the daytime, four times a day for all that time. These weeks of spending more time with her have revealed much more need than help with medication, so my visits are more extensive and include checking re washing, eating, drinking and walking her dog. I don’t have a lot of spare time to donate here or elsewhere at the moment (and my car broke down again yesterday!!) So I’m leaving stuff to everyone else to look after for a while.
Absolutely. I just wonder what is out there that I could contribute to. I do communications in academic medicine, so I know there are probably researchers looking at our issues who don’t know how to get the right inputs (aka people).
Tough times Mr. Richard, dementia isn’t easy for anyone. Remember to take care of yourself first, don’t do like I did and fall back into the trap of wanting to care for my parents and ignoring my exhaustion. I want to tell you a funny story about BH’s Granny who had Alzheimer’s. She decided I was her deceased husband and wouldn’t let it go. One morning she wanted me to climb into bed with her. The look on her face when she asked me was enough to turn me beet red and I told her Trouble, our Labrador would, I had to go work in the corn field. Her husband was a moonshiner.
@PibbleParentKelly
Hi, I also survived a ruptured brain aneurysm. It happened 4 1/2 years ago. I’m the only one with an aneurysm in my family that we know of.
I asked my neurosurgeon at my last checkup how many years he is going to do the checkups.
He responded that they follow the patient for ten years and that it is not only for the patients own health but also for the larger population of patients wit the same condition as we have. So it definitely goes into their database to be shared in scientific papers and the broader neurosurgery community.
Have you asked your neurosurgeon about this?