A suggested change to my treatment plan caught me off guard

Change happens, and it can be good, bad, or neutral. How we deal with it is the real challenge.

Having a family like mine that deals with multiple rare diseases means constantly confronting many challenges. When one of the rare diseases in our family is angioedema, the challenges associated with that can be very unpredictable.

I like to think that I’m rather adept at dealing with change. As a mother of a blended family with eight children, and now a few grandchildren, I’ve seen a great deal of change over the years. Our family has had plenty of health challenges and several rare disease diagnoses, including hereditary angioedema (HAE).

The onset of HAE can be unpredictable, and the symptoms may vary widely. My biological daughter, Aria, has allergic angioedema and uses only acute medication. My biological son, Dorian, has type 1 HAE. My adopted daughter, Leah, has type 2 HAE, along with many other health issues. I have type 3 HAE with normal C1 levels, along with several other diagnoses.

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Our triggers for HAE attacks vary and include environmental triggers, allergic reactions to food, mechanical vibrations from traveling, hormonal changes, disruptions in routine, and the overarching mercurial beast called stress, in all its forms. Our symptoms include both internal and external swelling.

At a recent appointment with my immunology doctor, I was surprised when he suggested a possible change to my treatment plan. Typically, appointments for my family are rather routine. First, we greet the staff we’ve known for years, provide status updates, and confirm that our maintenance and rescue medications are working. But this appointment was different.

Over the past month, I’ve experienced a great deal of stressors. Some were family situations, others were business-related, and all of them triggered multiple HAE flares that required a greater amount of emergency treatment.

As I discussed the recent attacks with my doctor, which I believe were likely stress-induced, I was surprised that he suggested a new treatment plan involving another injection. I’ve never been a fan of needles due to childhood trauma, so my first reaction was skeptical.

Furthermore, starting a new medication would require additional paperwork, multiple phone calls, insurance approval or denial, more appointments, and more. My plate is currently overflowing, and I’m not sure I can take on any more.

I haven’t decided yet if I’ll change my treatment protocol, and I’m currently researching the possibility. I’m going to take a step back, take my time, assess my options, manage my self-care, and seek guidance from fellow members of the HAE community. The goal is not to be overwhelmed by yet another change.

Life is throwing me a lot of curveballs right now. But I know I’m not alone on this difficult path of living with rare disease. I’m eternally grateful to have an understanding family and a wonderful community to support me on this journey.

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.