I was fortunate when it came to getting diagnosed with HAE. I’d lived with HAE symptoms for as long as I could remember, but when I turned 19, my swelling incidents became more frequent and began spreading to other parts of my body. So I went to see my GP about them. My GP referred me to a rheumatologist, who then referred me to an allergist/immunologist. He ordered a screening test that indicated HAE. I had an answer to what was wrong with me in just a matter of months.
I know how blessed I was to get confirmation of what was happening to me relatively quickly. I finally felt validation for my symptoms. True, it was very concerning to receive a diagnosis for a disease with no cure. But at least I had a name for it!
Regardless of how scary an HAE diagnosis can seem, I feel better at least knowing what my loved ones and I are up against, rather than not knowing. My heart goes out to all who have struggled for so long to get help and a proper diagnosis. It is not an easy fight. I am also thankful that now there are treatment options available.
Was your path to diagnosis long or short? Please leave a comment!