Rare Disease Day is Feb 28th ONE week away! This is extremely important for us. Not every state recognizes it--check your state. This is NORDS anniversary and most rare disease orgs are gathering online at youtube, see beloww;

"National Organization for Rare Disorders, Inc. (NORD) Show Your Strength. Share Your Story. Use a camera, phone, web cam or other video device and then submit it here http://bit.ly/h6GyoO and Alnylam will donate $10 for every video submitted to help support educational programs for all rare disease"

L Sterling at TMS did a wonderful video, already up on youtube. I highly recommend it. PLEASE take a look. Other rare diseases ill be promoting their cause too, lets make sure mast cell patients and families are not forgotton.

See that video here

Good video, but sad that it excludes all of us who have mast cell disease, but not masto. For example, I can't put that on my facebook wall, because everyone will think I have a disease, masto, which I do not. It's too bad that it excluded so many of us.

I partly agree with you, Deborah & Tracy. But a bigger part does not. Our complex illness with all of its various symptoms & manifestations is defined by an enormous amount of information. If each version of this disease was put into one video would make for a lengthy video with far too much information for rookies to make sense of.
I commend the author  for capturing and conveying what they are likely most familiar with.
It would be fabulous if there were several versions to match up with each of our types. Or even a template to go by to make our personal version with maybe an opening statement that covers all then states the types then leaves the rest for us to fill in.
I don't know. I'm just glad to see a great format for offering the info to those around us who need more understanding and plan to use this as a template for myself & possibly others with "my" type...
So there  ... (I just wanted to use the smiley sticking out his tongue for something. I really meant have a fantastically great and productive good feelin' day all!)