My mind can only hold so much before I begin forgetting things. I haven’t always been the best at documenting my HAE attacks. But keeping a record, whether it’s a journal or a document on my computer, not only benefits me, but my doctors as well. No one can keep track of what’s going on with me and my body better than I can—and it’s up to me to let my healthcare team in on that information.
It’s important to keep track of my HAE attacks because:
- I can look for similarities among the attacks or possibly discover a new trigger for an attack. I do my best to be vigilant of the triggers that currently affect me, like stress and seasonal changes. There could be more, but I have to recognize the trigger first, before I can learn to look out for it.
- By rating the severity and location of my attacks as they happen, I have specific information to present to my doctor at my next appointment. He then can better assess my HAE and treatment plan.
- Besides sharing this information with my doctor, I never know when I’ll need that information to show in the future. If I have it on hand, I’ll know right where to find it.
These days, I’m dealing with my HAE attacks by treating with FIRAZYR® (icatibant injection), a medicine used to treat acute attacks of HAE in adults 18 years of age and older, working with my doctors, and relying on my loved ones and the friends I’ve made in the HAE community. But there are always extra steps I can take. Keeping track of my HAE attacks is one more thing I can do to ensure I’m being my own best advocate on my journey with HAE.
Why do you think keeping track of your HAE attacks is important? Leave a comment!
Patient experiences differ for everyone. Hear from a Shire Ambassador at an event near you. Click here for more information.