Dear Past Self,
Shortly after entering into marriage, you learned of your husband’s hereditary angioedema diagnosis. Who knew that when you were declaring your vows, promising to stand by your husband “in sickness and in health,” that you were signing up to care for someone with HAE? You surely didn’t know.
But you do it! You become a wife and mother, all while maintaining a full-time career. You also grow in your role as a person caring for someone with HAE by:
- investing a lot of time into understanding HAE;
- helping others by sharing your knowledge and experiences; and
- realizing early on that knowledge is power.
You will consistently make every effort to stay informed by staying involved in the HAE community, which will one day result in a treatment plan for your loved one with HAE.
You will get to meet so many HAE patients and caregivers, and you will refer to them as your “HAE Family.” Looking back, past self, I can see how having many people to turn to for support has helped put your mind at ease. And by being a Caregiver Ambassador, you’ve learned the satisfaction that comes with being a strong supporter of others facing similar challenges.
No doubt you will experience stress and heartache over the years; you will wonder how you and your family are going to live a “normal life” while faced with the challenges HAE presents.
But I promise you, past self, that in the future, despite your husband’s HAE, many parts of life will be fairly normal … if there is such a thing.
Stay informed, keep an open mind, continue to broaden your “HAE Family,” and most of all, stay determined.
Remember that, with the help of your support systems, you can handle this HAE journey.
These are the things I’d tell my past self—what would you tell yours? Leave a comment!
Managing HAE differs for everyone. Hear from Shire Ambassadors at an event near you. Click here for more information.