I was diagnosed fairly quickly and easily, and, for this, I cannot express how grateful I am. But even though I've been blessed with that good fortune, I still understand and recognize that it can be difficult to talk with your doctor about symptoms.
HAE attacks can be embarrassing. Take it from a woman who knows! Thanks to experience, I typically expect that an attack will happen around certain parts of my body (if you know what I mean) if I sit on any hard surface—no bleachers for me!
Still, no matter what's happening with your body, don't be shy or ashamed to talk to your doctor about your symptoms or what you are feeling.
I know, for me, I always do my best to tell my doctors as much as I can. However, if you'd like something extra to make you feel more comfortable at the doctor's office, there are techniques you could try that may help make your visit more meaningful and informative for you.
I know many people who keep a log or journal—either in a paper notebook or with an app on a mobile device—of their attacks and symptoms to share with their healthcare teams. This may be a helpful tool for you to use for your own benefit.
(Though if you have a different technique, please share it in a comment!)
I encourage you to do what works best for you and not give up. Understand that your doctor may be learning from you at the same time you're learning from him or her—so be persistent, if need be, to make sure you're being heard.
And if you feel that you need additional information, I suggest:
- Reaching out to the HAEA
- Attending Shire educational programs, such as a Shire Patient or Caregiver Ambassador Program or Ambassador Health Program; or
- Calling a Patient Mentor through the You, Me and HAE Mentor Program
These are resources that are available to all of us and may help those of us living with HAE.
Ultimately, I believe there are similarities between those of us with HAE, but we may also have symptoms unique to just ourselves. That’s why, no matter how uncomfortable it may seem, it’s important to remember that you are your own best advocate.
Trust in yourself and talk to your doctor about your symptoms; you are the one who knows what you are experiencing with HAE.