In some ways, I have used my ability to educate others as an emotional safety net because helping others is how I help myself. If I am having a hard time understanding or accepting something about my HAE, I try to educate myself.
But then I realize that if I am having difficulty, others could be as well. So, I begin to work through the issue by sharing the information I’ve learned with others.
Actually, we are helping each other.
I find that listening to people often brings up questions I may not have thought of. Sharing information I find, whether with HAE friends or my physicians, makes it easier for me to move forward with life’s challenges.
One challenge that I have lived with is the possibility of passing this disease down to other family members. It is a heavy burden to carry. With each subsequent diagnosis of HAE in my family, I relive the new diagnosis as if it were my own.
And with every new HAE diagnosis in my family, I believe there is a need for continued acceptance, and a reset of emotions and knowledge within our family. I imagine this is the same for other HAE families. That’s when I think the HAE community should join together, support each other, and share their personal experiences with HAE. No one must be left in the dark and everyone should have the support they need, when they need it.
This disease is chronic; it does not have an expiration date. But I believe the future is looking better as our knowledge advances. By educating each other, that awareness will grow and hopefully, reach all members of our HAE community.
What have you learned by sharing your knowledge of HAE? Please tell us in a comment below!
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