Recently, my doctor inquired about my attacks—when were they occurring, how often, and was I able to identify a trigger? I was shocked to realize I could not articulate coherent answers to his questions—I simply wasn’t sure of the details! Despite it being a significant part of my life, I was not monitoring my HAE attacks. I knew I needed to take action and start tracking my attacks.
I thought about what might be the easiest way for me to keep track. A planner? On my computer? An app on my phone? Ultimately, I decided to purchase a small notebook for documenting my HAE attacks. Colorful and petite, I keep the notebook on a bookshelf in my bedroom. It’s convenient for me, and consistent use is the key to my success at tracking my attacks!
For me, I always note the following:
- Record each time I experience a symptom of an HAE attack. Am I having swelling, pain, nausea, or all of the above?
- Indicate if the attack was mild, moderate, or severe. I use a scale of 1-10 that I set up with my doctor, 1 being manageable and 10 being excruciating.
- Where the swelling and pain occurred. I note all areas of symptoms and variations in severity.
- Whether I treated the attack with FIRAZYR® (icatibant injection). FIRAZYR is a medicine used to treat acute attacks of HAE in adults 18 years of age and older.
- How long it took to feel relief of my symptoms
- Try to identify any causes or triggers
- Did I sustain a physical injury?
- Did I eat something out of the ordinary?
- Was I incredibly stressed that day?
- I always make note of my emotional state and anything that deviated from my normal routine
One of the beneficial aspects of my journaling has been identifying possible triggers for my HAE attacks. By keeping notes, it became clear that stress is a trigger for me. Attacks would often correlate with tests at school or important deadlines at work. Dental work and recurring hormone changes were also culprits for me.
Aside from being able to better communicate with my doctor, I’ve obtained a better understanding of my HAE as I record my symptoms. I find this knowledge empowering, and it helps me attack the attacks!
How do you keep track of your HAE attacks? Leave a comment and share!
If you have HAE, you may want to talk with your doctor about treatment options. If you want to talk about FIRAZYR with your doctor, click here to sign up for more information, including a page that you can download and take with you to your next doctor’s appointment. If you and your doctor decide that FIRAZYR might be the right treatment option for you, he or she can request a single dose of FIRAZYR as a sample for you to try.