Here I am in line at Trader Joes and I notice the kid in the cart in front of me has a really bad spotty rash and I hear the checker ask his mom is he had chicken pox or something and she told him no, its just really bad allergies. HUGE flag goes up for me so I ask her what happens when you rub the spots and the light went on for both of us when she answered. He has the same condition my oldest has! There's 2 forms, systemic and cutaneous (skin) and mine has systemic and he has skin but it was totally awesome to talk to another family in person who understands what life is like for these kids and the allergy 
you go though with them just keeping them alive. I could only talk to her for a few minutes since I had a ride waiting but she got my email and it was just really cool to find another family so close for an incredibly rare disease. I have never met another family in person at all so just double neat
you go though with them just keeping them alive. I could only talk to her for a few minutes since I had a ride waiting but she got my email and it was just really cool to find another family so close for an incredibly rare disease. I have never met another family in person at all so just double neat
)
I didn't even know about the conference. The masto doesn't give us much trouble anymore and now appears to be GI limited and has for a couple of years so I haven't felt the need to find support like I did when she was younger and life was a nightmare with the constant reactions and stuff. I'm actually glad she got the pediatric form rather then developing it as an adult, at least for peds it lessons as they get older so you have hope. I got a taste of what its like as an adult once, 7 ana rxns in 6 months, constant rashes and itching, body went on total overdrive and nothing that used to be safe was anymore. Don't care to repeat the experience, I'm sorry you have to deal with it
