Cerebral Amyloid Angiopathy. Pre Existing Medical Condition

I have Cerebral Amyloid Angiopathy.
I am not ready to stop travelling.
Finding Travel Insurance to cover my pre existing medical condition is a nightmare.
Have I finally found the right one this time?
My name is Jean and I have Cerebral Amyloid Angiopathy. My symptoms began 2014 but I was not diagnosed with C.A.A until mid 2020.
I want to share my CAA Journey with you.
Today I talk about my quest to find a Travel Insurance Company to cover me.
Check back regularly for updates
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CAA increases the risk for stroke caused by bleeding and dementia.
Prominent cerebral amyloid angiopathy is often observed in the brains of elderly individuals and is almost universally found in patients with Alzheimer's disease. Despite the prevalence of the condition and associated morbidity, no effective treatments exist

[@TheonlySpecia1k]

Thank you for your opening up about your journey. I was diagnosed a week ago. You give me inspiration and hope. I'm not alone. I hope you're doing well. God Bless.

[@mycerebralamyloidangiopath4710]

I am amazed at how many people have this diagnosis. You might like to join a facebook page to help give you strength

[@debbiebrannon8874]

Praying for a healing for her amen

[@mycerebralamyloidangiopath4710]

Thank you

[@JM-sj6ne]

Jean first I want to say I will pray for your healing. Second we are grieving my ex husband and our children we aren't doing good with this CAA. We don't know anything about it except Google and they say to stay off Google. His present wife wanted to have his brain removed and studied to tell us what and how and any information they could tell us all. His was so quick, started with headaches bad ones, but he thought he was just getting migraines again, he had them earlier in his life. Then about a month later he had what seemed to be a stroke.. she took him to the er and they took xrays and they couldn't find anything wrong. Just take him home and keep an eye on him. Now the next one was 3 months later. She took him to a hospital she got her doctor residency at. They saw the xray and said he had a mini brain bleed. They couldn't find answers of why? was it a stroke? They said it was a Haemorrhagic stroke. Okay why does that type of stroke happen. It's hard to say. They believe CAA! Theft sent him home keep an eye on him. 2 months later he had a massive brain bleed, he was put on a helicopter and went to a neurologist special hospital. This doctor after 3 days his wife called the kids and said you better come quickly I don't know how long it will be. John had a dnr in place so the doctor said there is nothing they can do. And he would be a vegetable so it's probably best he has the dnr. The whole thing was to fast from October 2023 to his death December 2, 2023. I want you to know that I have been watching your videos and feel like I am getting some information from you so thank you. We still haven't got the results with his brain yet. They said it could be up to 3 months. We all just want to know how it happened so fast. He actually was doing rehab and doing pretty good before the last one. Nothing make sense.. So please know that I am praying for you, and I thank you for opening up for all of us that are dealing with CAA our a loved one that had it. God bless you and keep you. With great appreciation Love and hugs Joyce Murray

[@mycerebralamyloidangiopath4710]

This is devastating to hear. I am sorry for your loss. C.A.A doesn't appear to be widely known about and many Neurologists know nothing about it. Because I am not a Doctor I will not go into trying to answer your questions as I do not have the answers. Time frames of life seem to differ immensely. He very well might of had it for years undiagnosed. From what I believe, Cerebral Amyloid Angiopathy is a build up of the Amyloid B protein which forms in the brain and makes the blood vessels brittle and then they bleed. Many small bleeds until they get to the stage of massive hemorrhage. Usually the small bleeds create a stroke like symptom which is often misdiagnosed as T.I.A but is not. The disease often affects cognitive function also. I pray that you all find the strength to get through this sad loss.

[@janmartell9792]

My husband has been diagnosed with this. It seems they don't know a lot about it to predict what's going to happen to you. Look how well you are doing. I'm not going to lose my mind over this, and besides it's in God's hands.

[@mycerebralamyloidangiopath4710]

Thanks. Hope all is well

[@natashaivelisse6127]

Hope your doing okay haven’t heard from you 🙏 sending prayers

[@mycerebralamyloidangiopath4710]

Luckily doing well health wise. Just finding it hard to find good medical health specialists.

[@RJSmith-jo7oe]

Hi Jean, thank you so much for your videos. Hope you are reasonably well right now. I live in The Netherlands, especially over here, there is not much community spirit (not that I know of). I am thinking about creating my own YT channel on CAA since I have it as well, but I am a little doubtful. Mostly in Dutch, sometimes in English, I'm not sure if it is a good idea. After all, it will be temporary :(

[@mycerebralamyloidangiopath4710]

Thanks for subscribing and for your message. I am slow responding because I have down days where I do not feel like getting on the computer. I think this is a very confusing disease. I started this channel mainly just for something to do. I have another channel where I upload our travel videos but although public, it is mainly for the family to have for later. I started that channel when I thought we were just going to die from old age. LOL. Why not start a channel. I think it is useful somewhat to others and it will give you an outlet. It is simple to do. I do not have a lot of content up as I am fairly stable at this time and I do not find a lot to video about. I think I have seen you commenting on the Cerebral Amyloid Angioplasty Support Group. Is your first name Royston? I stopped driving. I am scared I might be a risk to someone if something happens while I am driving. I note you remarked that one day you lost orientation. Do you ware some sort of tracker that family members can use to track you should you lose your way. I will get one at some point but right now I am always with someone when I leave the house. I don't need to be but I am paranoid something is going to happen to me. Feel free to chat anytime. Don't forget that it takes me a while to respond though. Regards Jean

[@judygravespdx]

Jean, which CAA group are you in? I think I have seen your posts. Thanks for this info. Hopefully o can travel again someday.

[@RJSmith-jo7oe]

​ @My Cerebral Amyloid Angiopathy Journey Hi Jean, no worries for responding late. Same for me, as a programmer I could not stay away from the computer for more than a couple of hours, but now it requires a lot of effort to even reply to a whatsapp, so, here you go :) Thank you for your reply. I don't have a lot of content either, but maybe I'll give it a shot (doing a YT channel I mean). And I did comment on the CAA Support Group on FB, I am grateful for this group. Last June we went on holiday by plane, come to think of it - I'll soon post it on the CAA Support Group since there were concerns on flying with CAA. I did not experience any trouble, but then again, CAA is a silent disease. In the Netherlands we call it a time bomb in one's brain. Ah yes my first name is Royston, I am British but since I was 3 I live in the Netherlands (from 9 to 11 y/o, in the seventies, we lived in West Germany), my Dad was a bandsman in the British Army back then, and my Mum was Dutch, although she became British and now she lives in Germany, I live in Holland. Don't ask :) :) The family tracker is great, www.life360.com, should you change your mind. You say you might be feeling somewhat paranoid - we all do with this desease, I suppose. This thought sounds familiar to me. We all have a temporary life here. For me I have my faith in Jesus, that makes one having a perspective for eternity with a perfect body. Last week I had a meeting with someone who said, when we said our goodbyes: 'Get well soon'. That sounded weird, and this person was the first to hear this from. Still, he meant well. Take care, hope to hear from you, hugs, Royston

[@mycerebralamyloidangiopath4710]

I think you should go ahead a begin making youtube videos. I think there is a Dutch form of CAA isn't there? You might just be able to give someone some support without really knowing you are helping them.

[@mycerebralamyloidangiopath4710]

@@judygravespdx Amyloidosis-CAA- Cerebral Amyloid Angiopathy Cerebral Amyloid Angiopathy Support Group and Chat