Does anyone suffer from CAA.

[Fajarabird]

I was diagnosed withCAA wo yeaers ago.had two strokes now and not seen anyone posting about it. Stands for cerebral amyloid angiopathy. Basically,my brain has a coating of amyloid and it causes strokes when I had the last MRI, they. Said there were indications I,d at least a dozen in the past few years.

Just asking........hate googling......mostly bad news

[cat3]

I have to go out now Val but, if you've heard nothing by the time I get back, I'll Google it (& leave out any unnecessary scary stuff).

See you later m'dear ! xx

[cat3 in reply to cat3]

Val, I've copied & pasted the following statement from the CAA Research Centre website :-

CAA is defined by a type of protein deposit in the wall of blood vessels in the brain. CAA is actually a common process in aging and usually harmless.

There's a whole lot more information, some of which explains how the condition can cause strokes (as you already know) and most of it (though far too technical for me to understand) suggests that it's under-researched and not yet properly understood ! It's definitely age related though.

I wonder whether Headway might have more (user-friendly) information. Try them m'dear on 0808 800 2244 tomorrow.

Sorry couldn't be of help Val. Take care.......love Cat xx

[Julesgettingthere in reply to cat3]

Hello Cat, Jules here - you will be asleep -

so posting this assuming you will pick it up sometime tomorrow maybe.

Im awake as is normal for me as you well know - if i dont post it now i will forget !

I have just seen the post from Fajarabird (mum) and feel really sorry for her. I dont understand exactly how her condition will behave in the future and i know she has tried to learn about it, as i have.

What i do know is i get through a lot of my dark hours because i can actually speak to (post to) others who have a traumatically caused condition affecting the brain.

I can see from her profile page that one of her first posts was asking if anyone else was suffering the same 'CAA' condition as she is isolated in West Africa.

What she is longing for is to chat to someone suffering the same condition - i am guessing there arfe probably questions to be answered that text books dont cover - dont know but i guess.

Do you know Cat how i can find out if there is a forum that might also have CAA sufferers if there are none that post on Healthunlocked ? I know she is a member of the 'Different Strokes' forum' but doesnt seem to have found anybody to chat to their about it either.

I will try the computer myself to see if i can find an alternative - i just wondered if you knew how to go about it ? There must be someone somewhere in the world wide web on a forum somewhere mustnt there ?

Kindest regards to you Cat

Jules

x

[cat3 in reply to Julesgettingthere]

I'll do my best m'love. Nice to see you're still doing the night shift ; good to have a fellow owl ! xxx

[Julesgettingthere in reply to cat3]

I strike again with yet another computer error - my email says i have somehow now joined CAA International and am entitled to download some publications ? oops.

Jules

[cat3 in reply to Julesgettingthere]

Another fine mess you got yourself into !!

You're so lovely Jules. xx

[Julesgettingthere]

Hi Cat,

Nice to see you.

I am looking on the computer right now - but the forums for CAA all seem to be for professionals/doctors.

Will keep trying.

Its odd isnt it (is it?) that nobody posts on here with it.

Jukes

x

What you doing up ?!

[cat3]

Found a support group in the US and tried to copy and paste the details but didn't work. I'll make a note of the organisation and come back with it ! xx

[cat3 in reply to cat3]

This seems the most promising :-

amyloidosissupport.org

** If you focus on the left of the page and scroll down there is the option of 'Survivor Stories'. Click on that to be taken to the appropriate page then select any individual for their personal story.**

Don't know whether you've noticed it yourself Jules but your whole demeanour seems so much more calm and balanced since your therapy ; I've really noticed a massive difference.............looking good m'dear !

Night-night Jules. xx

[Fajarabird in reply to cat3]

Hello cat. I didn't reply becaus e I had a melt down last night and I seem to have forgotten how to type. It happens but now I seem to have forgotten to act all y work the page as well. It will pass, it usually does. Thaank you for trying to find out the info for me. I,ve had real problems with it. Sometimes I feel this is only me........why can I not gt information on it........I knew it was a disease that got worse with age, but it would be so helpful if I could get more info on it. Wishing I lived in the u.k. So I could phone heasway.

Thank you qagain

[cat3 in reply to Fajarabird]

Oh poor you Val. There's a link and some directions above when you're feeling a bit better, but why not rest for now and leave anything too stressful for another day.

Sending a big hug ; talk again soon. Cat xx

[Julesgettingthere]

Aw thanks for everything once again Cat, mum sounds down i will see if i can catch her by email.

I will have a look at the info too and see if i can find anything else. Its really odd you cant just find a firum just like that.

Kindest regards, as always,

Jules

x