Hi Cassie, Great video - I felt like I was there with you walking around that park! I didn't know Sydney Park was that big either so next time we will share a map if we are hosting at locations that big! Glad you found the rest of the group and enjoyed the meet up :-)
How long have you been living with undiagnosed symptoms, and how bad are they? Nothing to be scared of really, might take a bit of an adjustment period.
Not sure if there is any eoe meetups like you had in Austrailia in the U.S.. The best thing that a friend found was a thing on Facebook. (I don't like it because it isn't support, it's just pity parties and not much of sharing stories and experiences). I have never met or known any one other than you to have this condition. It would be nice to meet someone local who does. It's always good to have someone to relate to, even if its for something as horrible as eoe. Oh and did you meet anyone who had the bad breathe? (just curious) -Twenty Five
Have you had a look at apfed.org/ ? Looks like they might have a group going which may hold meet ups. It's kind of hard to find support groups who do that kind of thing, just have to try your luck at some :) No one there mentioned that they had that symptom, unfortunately.
Hi Cassie, Great video - I felt like I was there with you walking around that park! I didn't know Sydney Park was that big either so next time we will share a map if we are hosting at locations that big! Glad you found the rest of the group and enjoyed the meet up :-)
That's a good idea haha, i should have looked it up beforehand haha, got my exercise in for the day at least 😊
Hi Cassie, love your videos. I got diagnosed yesterday, am really scared and don’t know what to think.
How long have you been living with undiagnosed symptoms, and how bad are they?
Nothing to be scared of really, might take a bit of an adjustment period.
Not sure if there is any eoe meetups like you had in Austrailia in the U.S.. The best thing that a friend found was a thing on Facebook. (I don't like it because it isn't support, it's just pity parties and not much of sharing stories and experiences). I have never met or known any one other than you to have this condition. It would be nice to meet someone local who does. It's always good to have someone to relate to, even if its for something as horrible as eoe. Oh and did you meet anyone who had the bad breathe? (just curious)
-Twenty Five
Have you had a look at apfed.org/ ? Looks like they might have a group going which may hold meet ups. It's kind of hard to find support groups who do that kind of thing, just have to try your luck at some :)
No one there mentioned that they had that symptom, unfortunately.