Happy belated rare disease day, everyone.

[EmersonAilidh]

Didn't have time to post this on the actual day but I figured better late than never. Most of y'all know yesterday was Rare Disease Day! The theme was "rare but equal". Proud to have done my part to spread awareness (even if not a single person asked about the random letters on the back of my shirt... oh well) & can't wait for next year! Maybe we can all plan something. Not anything big, obviously, but anyone have ideas for advocacy projects? Thank you all!

 

 

Anyone besides me & PixiesMommy do anything special?

 

[pixiesmommy]

Pixie wants me to make her a PANDAS shirt this weekend, so we will work on that together. She actually goes in tomorrow for adrenal testing, so maybe we'll design it together while she is hooked up to the IV. Mine is a Chronic Lyme one and has all the symptoms I have experienced listed on it- it turned out pretty well and I wore it to DH's school since I was there on an eco-panel he was doing for his freshman yesterday, as a speaker. I'll try to get some pics of it soon!

[MichaelTampa]

Looks like you'll get your wish of SOMEONE asking about the letters. Understand the PANDAS, for sure, but what is "TS-L"? Cute outfit!

[thereishope]

Alone we are Rare. Together we are Strong. Good job spreading awarenees, Emerson!

Edited March 1, 2011 by Vickie

[Fixit]

did not know yesterday was strang d-day...it was also ds 11th b-day...go figure...

you are adorable.(you'll enjoy that compliment when you are older)....if you can wait till you are 30...i have a really cute strange-d kid, who, if he follows both sides of his families histories..will likely be chasing down an older, more soffisticated woman

[EmersonAilidh]

MichaelTampa ~ "Third-Stage Lyme"! Chronic Lyme, Persistent Lyme, Late-Stage Lyme.... Different names for the same thing, haha.

 

PixiesMommy ~ Sounds cool! I wanted to include a lot more but didn't know where to draw the line & also didn't think there was enough room on the shirt to include everything, hahaha. Can't wait to see it.

 

Vickie ~ Thank you. I'm adding "Rare but equal" at the top of the back as soon as I get the time.

 

Fixit ~ Haha! Why thank you. & I don't blame you for not knowing. I'm the only person I ran into that knew, haha. Wish it would get some media attention. With all of the dumb media blitzes that do, you think this of all things would! Bleh.

 

 

 

 

 

Also. After a conversation with Elizabeth I've been wondering. Why don't we call it PITAND? I'm certainly not against P.A.N.D.A.S. or anything since I react most strongly & noticeably to strep, but for those of us with multiple infection reactions, why do most of us on here never talk about the whole PITAND picture? Just a thought.

[thereishope]

As for the PANDAS vs PITAND, I don't think anyone is "against" PITAND at all. I think those outside our forums recognize the acronymn PANDAS more. It's a way to introduce them topic to them then explain how it can be more. The whole discussion of this disorder actually not being exclusive to strep is discussed on here a lot. We often ask if the child has been sick, could have a different infection or have allergies. I don't know why the acronymn PITAND isn't used more frequently. Even if the new name becomes offical soon (Swedo used the acronymn PANS on the radio show, I bet people on here will still use the word PANDAS for a bit. But, depending on what PANS actually stands for (we can assume/guess what we want), it may very well encompass various triggers and infections and put both the PANDAS and PITAND acronymns to rest.

Edited March 1, 2011 by Vickie