My family has supported me through every step of my journey, but even the people closest to us may have struggled at times to truly understand our hereditary angioedema. It can be frustrating and saddening—on both ends!
When I think back, aside from a basic understanding of causes and symptoms, these are the top five things I would have wanted my family to know about HAE throughout my journey:
1. It is a hereditary illness
According to published materials about HAE, a parent with HAE has a 50/50 chance of passing the disease on to his or her children, but although this is a hereditary illness, it can also occur through spontaneous mutation, which is how I got it. Spontaneous mutation can happen in up to 25 percent of people with HAE. This is one reason why testing is so important. People cannot address what they do not know!
2. The pain is real
Often, people with HAE symptoms are questioned by friends, family, and healthcare professionals, and not given the validation they deserve. There were points early in my journey with HAE when I wanted family members to understand that my illness was legitimate and not something to be taken lightly.
3. There are treatments available
I want my family to know how much I appreciated their help while I worked with my doctor to select a treatment plan for me. I encourage other families to talk to their loved ones with HAE about discussing available treatment options with their doctors.
4. We are not alone
My family and I are very close, but we still felt incredibly alone after my diagnosis. Now we realize that there is an HAE community! We have frequently attended HAE conferences and programs. I think it’s wonderful when others realize that there is a family outside of our families—people shouldn’t be afraid to reach out!
5. I am still Katie—just with a twist!
At the end of the day, my family knows that I am still me and throughout my experiences with HAE, that is something I’ve always wanted. I still have hopes and dreams, and I know that I can work to accomplish them. Life may be different than we expected, but it is still beautiful!
What do you want your family to know about your HAE? Leave a comment!
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