Come dancing with me as I share our family’s rare disease journey

Hello, and welcome to my column. My name is Natalie, and I’m a 59-year-old rare disease patient, along with several of my family members. This column will focus on my most recent rare disease diagnosis: hereditary angioedema (HAE).

I named my column “Dancing with Rare Disease” because in addition to congenital rare diseases, my family also has a long history of dance. My mother is probably the originator of this artistic family fad. She grew up in the 1940s and ’50s and has always loved to dance. After my father passed away, she’d attend community dances every weekend. Blessed to be the one with the least diagnoses in the family, she constantly listens to her favorite music while dancing around her apartment all day. At 90 years old, she’s still going strong!

I took dance classes in college, and my youngest son was a competitive ballroom dancer for years as a teenager, until his health issues became an impediment. These days, my best dance partner is his little boy, my grandson, who when not dealing with his own health issues, loves dancing with his nana at every opportunity.

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A diagnosis chain reaction

My rare disease “dance” started at birth, but my actual diagnoses began in adulthood, at age 40. They include, but aren’t limited to, chronic Lyme disease, Ehlers-Danlos syndrome, mast cell activation syndrome, and most recently, angioedema.

HAE has become part of the vernacular in our lives over the past several years, starting when we were told that our adopted daughter, Leah, had it. During appointments with numerous specialists over the course of four years, most of them tried to find the origins of Leah’s multisystem symptoms, while others were completely unwilling to join in the dance. In 2019, we finally found an immunologist who rose to the challenge of Leah’s diagnosis. She was diagnosed with HAE type 2.

Fortunately, Leah, now 22, was able to finally find relief from her swelling with the first treatment she tried! Since then, due to the challenging requirements of various health insurance plans, she’s tried at least four others, three of which caused adverse reactions. That, in turn, eliminated the option of two other HAE medications by default. She’s currently on a maintenance prescription that controls her swelling enough to keep her mostly free from her rescue medication, the only other option her body has tolerated.

Since that time, both my son and I have joined the party, having been diagnosed with different types of HAE. He has type 1, and I have type 3. We’re so thankful for Leah and her journey, which led us to our own diagnoses and a better understanding of hereditary angioedema. It has certainly been a long and arduous road to get to where we are today. Thus, we keep dancing, navigating the ever-changing triggers and rhythms of this journey with rare disease.

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.