Just when I think I know everything there is to know about my husband’s HAE, something changes. For example, David might discover a new trigger. And it affects not only him, but because I care for him, me as well. That’s why I feel it necessary to stay informed. Whether it’s before or after diagnosis, there can always be more to know. Since David’s diagnosis, I find information on the disease in various ways:
- Our Doctor –David and I are so fortunate to have found a physician who is very well educated on HAE. If we have any questions or concerns, we call the office or make an appointment.
- Social Media – Some people are not fans of social media. I personally could not live without it. By subscribing to various Facebook pages, I get to network with HAE patients and other caregivers, which provides me with insight and real-life experiences that can’t be obtained from a book.
- HAEA – I’ve found that the Hereditary Angioedema Association or HAEA is also a good resource for learning more about HAE. There are many ways to connect with the HAEA online, the HAEA website is a great place to start.
Please note Shire is not responsible for the content provided by third parties on any websites or information distributed by HAE support groups or organizations.
- My HAE Family – Speaking directly with HAE patients and those who care for people with HAE has been very helpful for David and me. I have been fortunate to meet many great people through my journey of being a caregiver—people I’ve become very good friends with, even though most of them live hours away. Thanks to modern technology, I can send them a quick text or email if I have a question, need some reassurance, or just want to check in.
Where do you look for information on HAE? Leave a comment below.
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