Idiopathic angiodoema

[shmiz]

Hi -
we are in the midst of the uncertain / stressful world of idiopathic angiodoema with teenage DD
swollen lips,
gets panicky, feels tongue swelling
seems stress related sometimes
on high doses of Fexofenadine

anyone else going through this ???
thanks

Very late to this but I suffer with this and also take fexofenadine. Any update on how your daughter is getting on? I don’t know anyone else who suffers this and feel helpless sometimes. The worst thing is how unpredictable it is!

Hello !!
things are not settled with the swells currently !
smoke machines -
like you get in theatres etc set her off with throat irritation etc
her usual triggers are fatigue / stress
the unpredictability of it is the most scary part

how long have u had it ??