Corrine Castillo
Chronic condition(s):
Hereditary Angioedema
How long has your condition(s) played a role in your life? Feel free to share when you were diagnosed/started having symptoms/etc.?
I was diagnosed with Hereditary Angioedema (HAE) at 22 years old. Though I received my diagnosis late in life, HAE has always been an integral part of my life and my story. I come from a family with an extensive history of HAE. The condition has impacted multiple generations of our family tree, with my father, grandmother, great-grandfather, and siblings all being diagnosed with the condition. For most of my life, I believed that I was the only child that did not inherit this debilitating condition. I was regularly tested throughout my childhood and never showed any symptoms. Then, I became pregnant with my first son and suddenly began to experience symptoms. Away from my family and our medical team, and believing that I did not have the disease, I misidentified my symptoms. I thought my nausea, vomiting, diarrhea, swelling, and intense headaches, were simply extreme cases of typical pregnancy symptoms. Unfortunately, I was wrong. As I progressed through my pregnancy my symptoms only became worse and began to threaten the health of my baby. When it was finally time to deliver, I experienced one of the worst attacks/flares of my life. I did not have the resources or knowledge to advocate for myself, and my concerns were dismissed in the hospital. I continued to have symptoms off and on for a year postpartum. After speaking with my family, and becoming pregnant again, I knew I needed to relentlessly pursue a diagnosis. Ultimately, I was diagnosed with Hereditary Angioedema type 3, which is HAE with normal C-1 inhibitor function.
What has been your greatest challenge with your chronic illness?
The most challenging part of living with Hereditary Angioedema has been learning to accept what I cannot control. I can’t control my symptoms, or when they choose to flare, or what I need to treat them. Having so much of my life be dictated by something that is out of my control is both inconvenient and terrifying. I fear being perceived as inconsistent or unreliable when I can’t show up the way that I used to, even though my circumstances have changed drastically.
What has been your greatest accomplishment with your chronic illness?
My greatest accomplishment has been my advocacy and finding a place in the chronic illness community. I started my platform in hopes of connecting with other people like me and spreading awareness about Hereditary Angioedema. I’m grateful that I have met so many people, have been inspired by so many stories, and have inspired others with my own. My goal is to use the experience I’ve gained as a caregiver, advocate, and now as a patient myself, to carve out a better path for HAE patients of the future. By using my voice, connecting with other patients and organizations, and sharing my story, I believe that I am doing just that.
Do you have any advice for someone new to the world of chronic illness? What is one thing you wish you had known that would have made your life easier?
The best advice I can give to anyone new to the world of chronic illness is to remember that your mental health is just as important as your physical health. Whether you are newly diagnosed with a chronic condition, or struggling to understand ongoing chronic symptoms, dealing with long-term, adverse health problems can send your mental health into decline quickly. It is easy to succumb to negative feelings, frustration, and helplessness. Doing so makes it all the more difficult to give your body the care that it needs. Cultivate a strong support system if you can and don’t forget to take care of your needs that exist outside of your condition.
If you’d like to learn more about Hereditary Angioedema and donate to support HAE research, please visit US Hereditary Angioedema Association.
If you’d like to follow Corrine on her chronic journey, please check out her Instagram: @myrarejourney
Corrine’s website/blog: fatiguefriendly.com
Feeling inspired to share your story too?
