I cannot get enough inspiration from Moms and Dads who are heroically trying to find answers when their children are sick—and doctors are scratching their heads! I read about a…
Ya know that “I’ve Fallen & I Can’t Get Up" joke? When you have postural tachycardia syndrome (POTS), jokes like that wear thin really, really, REALLY fast. What is POTS? Have…
If you are the parent of a child who has a rare disease, you know how difficult it can be to explain why they can and can't do certain things.…
To read part 1 of Teresa's post, click here. The sooner you treat [during an HAE attack], the better HAE meds work! The second stage of attacks is the swelling that is…
I saw a quote, recently, that resonated with me. It said: "I fight for my health every day, in ways most people don't understand. I'm not lazy. I'M A WARRIOR." Dealing…
Si usted o su ser querido está viviendo con una enfermedad crónica rara, probablemente ha pasado por las diversas etapas del duelo: negación, ira, depresión, negociación, y es de esperar…
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