HAE Day, celebrated annually on May 16th, can be many things. If you have the opportunity to attend an event or sponsor one yourself, whether the focus of the event is raising money for research, raising awareness in the community, or honoring the memory of a loved one lost to hereditary angioedema (HAE), we say, "Do it!" Bloggers Mike and Claudia reflect on their favorite HAE Day experiences.
From assisting me with specialty pharmacies to insurance questions, OnePath®, Shire’s personalized product support service, has helped me in numerous ways—some of which surprised me. I can’t thank them enough for all they have done.
Hereditary angioedema (HAE) can rear its ugly head at almost any time, and it’s often unpredictable. However, I have noticed certain things can be a trigger for me, and when those triggers unexpectedly show up in my life, they make me worried that an attack could happen.
I’ve realized that I was lucky to receive a hereditary angioedema (HAE) diagnosis fairly quickly. Many people I’ve met had to wait years before being correctly diagnosed. HAE symptoms may be hard to diagnose: random odd swellings or repeated debilitating abdominal attacks may be identified as allergies, a "nervous stomach," appendicitis, or the dreaded "psychosomatic illness." I’ve learned that it’s my job to clearly relay my HAE symptoms to my doctors, so they have the information they need to help me.
My “HAE Family” is very diverse, as it consists of fellow caregivers, people with HAE, physicians, and patient advocates—all from whom I’ve received support. Hereditary angioedema (HAE) isn’t something I want my husband to have, but I’m lucky to have had the opportunity to know so many people who understand my journey as a caregiver.