I am always surprised, in a good way, when I participate in a live educational program as a Shire Ambassador, for lots of reasons. But here are my top three:
- I never know how my story is going to resonate with someone else
- One time, I had a gentleman come up and thank me. He was visibly emotional. He introduced himself and his wife to me, and then said that he had not been fair to his wife all these years. Something I said had truly connected with him, and he said he finally felt like he understood the impact HAE had on his wife. He apologized to her and told her that because of what he had learned at the program, he would be more understanding of her condition from that moment on. WOW—that called for a group hug!
- Being reminded that spreading awareness about HAE isn’t just “a nice thing to do;” it’s vitally important
- Every time I meet someone who has lost a loved one to this condition, I am heartbroken and even more driven to continue to be an advocate and bring awareness and understanding. Hearing stories and sharing is powerful.
- Sometimes, my program is the first HAE educational program a person’s ever attended; he or she doesn’t know anyone else who has HAE
- It will always have an effect on me when I am the first HAE patient someone meets. It is often emotional. I completely understand that feeling of meeting someone else who has HAE the first time. It brought an array of feelings that I will never forget—someone else kinda goes through what I go through!
For these, and so many more reasons, I am forever grateful for the opportunity to be a Shire Ambassador, and I continue to be blessed.
What have you learned from hearing the story of someone who has HAE? Please leave a comment!