Welcome, Johanna


Hello Johanna, and welcome to Living With Ben’s Friends. As a future scientist but a relatively healthy person, I think I can grasp some of the feelings you are experiencing here. It must be frustrating when life surprises you like this. We are all vulnerable beings, but that doesn’t get in the way of us beings positive. I can sense your strength and bravery through your words and actions: getting help both physically and mentally are the best evidence. I am glad you chose to have us by your side to offer you support, and I hope we can give you whatever kind of help you are looking for.

A side note: as a science student I’m really curious about what you study as a scientist. I’m currently going into my third year, studying physiology. Please feel free to share whatever you are comfortable with!

With love,


Thank you for the welcome, Christie, it has been a very difficult year. I am molecular biologist and work in gene expression regulation, genetic and epigenetic, nowadays with gene editing. I have applied to a promotion which I have been pursuing since 3 years ago and I fall in crisis thinking what if I do not get it but also what if I get it. It involves 50% time traveling and I have counterindication to plane trips. Then sometimes I wonder abojt the re-bleeding risk. I used to see this promotion like a dream come true, and I felt one of the most qualified candidate but now all the insecurities have flourished. I am doubting of my cognitive abilities due to the symptoms only me can sense. It is the reason I need to know whether other people feeling the same has been able to compensate the limitations and moreover I need to know if they are real. My family says they might be present always and now I give them more importance. This let me to believe I am fabricating them, and as I mentioned now I do not know what is real, if those are psychologic I will be able to overcome them. But if they are real and permanent it will be a long way for me to learn how to life with them and accept them.
Sorry for the long reply, you may sense correctly I cannot talk about this with many people, and I do not meet so far any other AMV patient.


Welcome to AVM survivors! I hope we can find you some people in a similar situation who are now better. It sounds to me like you’ve had a bleed and that has done some damage but your young and I hope you will get better. A year is still quite soon for such damage.

We also have people from all over the world, so I also hope you might find support from another German speaker.

Welcome and very best wishes


Hey Johanna,

Wow, thank you for your extensive reply! I really appreciate it. I’m not in a position to give advice, but someone important to me has always told me this whenever i feel anxious or uneasy: life works itself out eventually. Getting or not getting something you want right now might lead you to two futures that you are equally satisfied with! I believe the world is molded by the way we see, feel, and think of it. So just do what you think is the right thing, and always keep the positivity going. It can definitely get hard at times, but your family, friends, us, and other people who love you are always here for you. I believe in your strength.