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Read a story
April Henderson
I am a mid-30's female who was finally diagnosed at age 16 with EPP.
As a
child, my parents tirelessly sought diagnosis of the disease and
only by
chance, after I had a severe reaction, was I properly diagnosed by
a
Dermatologist at Kaiser Permanente. Dr. Rebecca Engassser just happened
to
be familiar with the disease, and helped me adapt my lifestyle to
accommodate the photosensitivity. Now, finding valuable resources
like
American Porphyria Foundation, my outlook is improving. Knowing that
I can
reach out to others who can understand what it is like to live with
this
disease is incredibly reassuring. I look foward to communicating
with
others, to share experiences, coping strategies, success stories
and giving
each other support! Thank you!
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