AVM Survivors Network

React! Share your thoughts

How has your life been affected by a disability? (Yours or someone else’s.)

What experiences have you had with disability issues? What can you add to the author’s do/don’t suggestions?

Share your thoughts with your fellow members!

My life has been completely derailed three times over. From first bleed at college I switched from software engineering to the ministry. After relearning to walk, talk, read, and write, I finished college. I had a second bleed which cause further medical complications. Then I worked as a pasted for 5 years. During that time I had 3rd bleed. I moved to Virginia with my family to finish my doctorate. Instead, my employer let me go. I applied for disability here and have been further indered by loss of vision and consequently loss of license as well. My wife shoulders the burden of work, sole driver, and mother to our children as well.

So far as planning, plan for the unexpected. If you can, life insurance is a good idea. Mutual of Omaha accepts brain aneurysms. https://www.mutualofomaha.com/

Second, don’t wait for the doctors to advise reactively but instead act proactively. You have a rare condition. Know what to expect. Familiarize yourself with the ARUBA study from https://www.ahajournals.org/doi/pdf/10.1161/STROKEAHA.116.014660

This is the largest study of AVM survivors conducted to date. And it states basically “don’t wait, you need to act.”

Third, do something to make others aware. Contact your congressman, contact you local brain aneurysm group.


This is a large organization dedicated to driving awareness of this condition.

Finally, do something. You probably have been changed, upset, and offset by this finding. So, since you and I are both gonna die someday, do something today to make the world aware of this malady so that research can be done and the malady mitigated for tomorrow.

Blessings as you go!

1 Like

Wise words! Thanks for speaking out, RB. Yours has surely not been an easy road.

We have a new member this evening, @Charleshoogenboom. A welcome from you and some other members might be exactly what he needs. If you click on the highlighted tag, you will be able to read his profile.

All the best to you and thumbs up for speaking out with your informative post!

Seenie from ModSupport

1 Like