Reflecting on the stages of growth I’ve experienced with EGPA
A columnist has come a long way since her symptoms began 18 years ago
I recently hit a huge milestone: Eighteen years had passed since my first symptoms of eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis, began, and it was the 17th anniversary of my diagnosis.
My EGPA has been through many stages of growth: sleep-deprived infancy, crazy toddler years, study-filled elementary school years, and a rebellious teenage period. It’s now developed into an adult — hopefully, a responsible one.
In the infancy stage, everything was new to me. I didn’t understand the medical terminology, every test was scary, and I had no idea what my life expectancy would be. I didn’t think I’d live long enough to see my oldest child graduate from high school. Thankfully, I’ve had the pleasure of seeing all three of my children do so, and I’ve even witnessed a couple of their college graduations.
By the time my illness hit its toddler years, I was unsteady and needed a lot of support, both emotionally and physically. I was confused at every medical appointment and felt like many dangers were lurking just out of sight.
The elementary school years were my time of learning. I decided that to conquer EGPA, I needed to educate myself. My mind was ravenous for any information about this disease and its treatments. I spent numerous hours in medical libraries and would take detailed notes to share with my healthcare providers. I started attending symposiums hosted by the Vasculitis Foundation to educate myself. At that point, I began to feel in control of my ever-changing body and the symptoms I experienced.
However, the rebellious teenage years were rough. This was when I questioned my diagnosis and tried to go off all of my medications. Maybe I thought I was invincible; more likely, I had to prove to myself that EGPA was still lurking in my body and not going away.
I did some potentially dangerous things during those years. I rebelled against the diagnosis and thought that if I ignored it, it would all go away. That was a huge mistake, and I ended up hospitalized and on large doses of prednisone and immunosuppressants.
Reaching maturity
As my EGPA enters adulthood, I feel more in control of my body and my medical decisions. Although I’ve never been in clinical remission, my disease has settled down and grown up, and I can sit back and observe more. I can’t relax at this stage, though, as this illness has a way of doing silent damage. There will always be routine tests and appointments, but I hope the wild and rebellious teenage years are behind me.
Along with my EGPA, I’ve also matured. I’m no longer that scared 40-year-old who had my life turned upside down as I came to accept my diagnosis. At 58, I have a greater understanding of the pitfalls of this illness and no longer see my life as having an expiration date. I use the saying “life is terminal” to remind myself that we must live every day to the fullest.
Living a long life with ANCA vasculitis is possible thanks to all the medical advances that have been made in the past 17 years. When I was diagnosed, my medication list was minimal. Prednisone and cyclophosphamide were my only options for initial treatment. I am glad that newly diagnosed patients have increasingly more options. I believe the research community has also matured and believes rare illnesses are worth investments of time and money.
When EGPA symptoms and medication side effects overwhelm me, I wonder if this is as good as it gets. Much damage has been done to my body, and I must contend with diabetes, high blood pressure, heart issues, and joint and muscle pain daily. As my EGPA matures, will my symptoms and disease-related issues lessen?
I am grateful that I survived those rebellious teenage years and that, as my EGPA enters adulthood, I can continue to learn and grow. I’m thrilled that I’ve entered this next stage with the support of my medical team, and I’m very hopeful for the future. Who knows? We could be talking about a cure by the time my illness reaches middle age.
Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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Comments
Cyndy Furze
Suzanne, beautiful article and person! Watching you 'growing up' through this has been a journey of inspiration.