For most teens in modern societies, adolescence is a critical period of social and psychological development. It is a time that marks the beginning of movement away from the parents, and toward the formation of life-long bonds with others. It is also a period of intense need to be accepted by friends, and to that end (especially for the girls), to look like, sound like, think like, and be exactly like the rest of the group.
Throughout my adolescence, I never had the freedom to do that. I was too preoccupied with keeping my occasional, grotesque deformities, which had started when I was 13, hidden. When I had a swelling episode in my hand, it would get so big, it looked like an inflated surgical glove! Then the swelling would travel all the way up to my shoulder. A foot swelling would become so painful, I couldn't walk, or even wear a shoe. I had excruciating stomach episodes and frightening throat swellings as well. The smallest pressure or slightest muscle-pull could set me off. I lived in a world of complete uncertainty. When all the girls would sit on the floor and gab, as teenagers tended to do, I would sit in a chair or on a bed because I knew sitting on the floor might trigger a swelling. (It was like “The Princess and the Pea!”) To others, I must have seemed odd. Over time I came to be known as undependable because I often didn't show up for get-togethers, even though I said I would. Eventually, the invitations stopped coming.
I remained undiagnosed/misdiagnosed (“allergies”) until the mid-seventies when my internist read an article in a medical journal about people with weird swelling symptoms... something called Hereditary Angioedema. He contacted Dr. Michael Frank, and shortly thereafter, a blood test showed I did indeed have HAE. Finally, my “weirdness” had a name! By then I was married with four children, three of whom share this condition.
But my nightmare continued, as there was no treatment for my swelling episodes. Moreover, frequent trips to the emergency room - especially when out of town - had become fraught with tension between the doctors and me. I had to tiptoe around egos. When I tried to explain anything about what to expect during my swelling attack, their attitude was: Who is she to tell us, how to approach treatment? The answer? Probably the only one among them who actually knew.
Unfortunately, for years there continued to be no treatment options for HAE patients - only pain control and hydration for abdominal swellings, and observation/intubation for throat swellings. Finally, that changed when David decided to take on Goliath. Because of the unrelenting, unyielding efforts of one Anthony Castaldo, later joined by a selfless, tireless, dedicated group of determined HAEA go-getters, not only do I now have a choice of outstanding, effective treatments, but my children, and my children's children don't have to deal with emergency room egos, pain, shame, or the fear of seeming “odd.”
Life is good.