A roller coaster of a year gave me new insights about living with HAE
I have had more than my share of stress-related attacks in 2025
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It has been a roller-coaster ride of a year for me, crazy busy and jam-packed with one concern after another — personal matters, family matters, and lots of health problems.
Hereditary angioedema (HAE) is my major health diagnosis these days, although I also have diagnoses of chronic Lyme disease, arthritis, Ehlers-Danlos syndrome, irritable bowel syndrome, mast cell activation syndrome, and long COVID, among others. I also learned this year that I have neuropathy, osteoporosis, and more degenerative issues.
Juggling new testing, follow-ups, treatment options, and the mental health impact has made things very emotional for me. As I’ve mentioned, stress is a big factor that affects my HAE flares. I have had more than my share of stress-related attacks this year.
A year of learning about HAE
Through it all, however, I have learned so much more about my version of HAE, and about prodromal symptoms and treatment options. I take Orladeyo (berotralstat), a daily prophylactic medication, to help prevent attacks. This spring, however, brought a major breakthrough attack and my first experience with an emergency injectable medication.
Traveling with HAE is difficult, as my focus is on avoiding flares and triggers, and managing my medications. But this summer, a new oral medication, Ekterly (sebetralstat), was approved for HAE breakthrough attacks, and having it made things easier during our trip to Baltimore in July for the Hereditary Angioedema Association summit, as we no longer needed to refrigerate medication or pack extra equipment for IVs or injectable rescue medications.
This autumn, I felt so empowered and was looking forward to some much-needed downtime, so we embarked on a weekend trip to the mountains. I had all my medications with me and thought it would be the perfect relaxing getaway. Was I ever wrong. It was there that I learned about prodromal symptoms, which I’d never been informed about or experienced before.
As we enter December’s dilemma of balancing health demands and holiday commitments, I am very thankful for all I have learned this year, not only about my HAE but also about myself. While I am still challenged mentally and physically, I am becoming more settled with it all and coming to terms with my new reality. Even though I am not who I once was, nor can I do things the way I used to, I still have purpose and joy in my life and am grateful. Life, joy, and gratitude are wonderful things, regardless of where we are on this amazing journey.
May you have a lovely and blessed holiday season, wherever you are, whatever you celebrate. And may it be filled with light, joy, love, and peace!
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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