Sorry chemgal, I'd donate blood or plasma if I could, but I can't due to my own medical reasons.

Can you recommend web sites or videos that I could post a link to on twitter and facebook that would provide information about Hereditary Angioedema and or HAE day

Oops, yes, there are some in the other thread, but I should have them here too!  Thanks Alex!

Share your smile for HAE Day:

http://www.haeday.org/smile

The HAE Canada Page:

http://haecanada.org/understanding/

(good link near the bottom if you're interested in detailed info about HAE)

And an international site:

http://www.haei.org/

Thanks Jae, I understand that quite a few people won't be able to donate blood for various reasons.

Anyone else?

Thank you chemgal for this post.  I had never heard of HAE before.  Life is constantly surprising -- a very rare condition with three different types.  I wish you well in your treatments.  When I was little, my parents used a 1:4 mix of alum and white sugar for me when I had breathing spasms caused by the Croup and when I had whooping cough (about a 1/4 teaspoon).  That mix is part of the reason I survived childhood.  I was wondering if it might work for people with HAE who experience Laryngeal swelling.

I have not been allowed to donate blood for over 20 years because of an issue with my immune system.  I will post a link on Facebook.

Thank you Jim!

I'm not familar with the alum & sugar remedy.  If it directly helps swelling it could help.  If it just soothes and helps the muscles relax, I don't think it would be beneficial for HAE.

I don't know how it worked  Several times when I had whooping cough, my throat or bronchus would be shut tight and I would be completely unable to breathe -- I would run to the kitchen and get the sugar and alum mix, and be breathing again within 15 seconds after taking the mix.  As it is a non-patenable medication, I do not know if any research has been done on it.  My parents got the recipe from the White House Cookbook in the late 1940s.  I don't know how whooping cough and croup work -- I have not heard the word "croup" used in many years.

HAE Day is today.