My name is Anne Zeijpveld. I’m 45 years old and was born in The Netherlands, but have lived in Seattle, United States since 2010. I have 2 young kids who are my favorite humans in the world! I love to spend time with them and my husband and our good friends. We love having friends over, going on adventures and we travel back to The Netherlands every summer.
How were you diagnosed and how long did it take?
I was diagnosed with MEN2A in March 2022. The first half of 2022 was a whirlwind, but my story really starts back in 2000. It was that year that I first went to see a doctor because of very bad headaches and extreme exhaustion. I was young and thought I was just not fit and started working out more to get fitter. Nothing helped and I remember I finally figured I should go to see my doctor when I couldn’t be in the shower long enough to wash my hair before feeling I’d pass out. My blood pressure was incredibly high, and I was immediately referred to specialists. A few months later, in March of 2001, a pheochromocytoma the size of an orange was removed from my adrenal gland. It was thought this was just a standalone occurrence and no further testing (DNA) was done.
Fast forward to 2021. A radiologist noticed something on one of my moms’ adrenal glands and told her to have it checked out. It turned out she had 2 pheochromocytomas, and of course, with my history, the suspicion of a genetic issue was strongly there. I travelled to The Netherlands to be with my mom for the surgery. She was by then diagnosed with thyroid cancer and more.
I travelled back to Seattle, thinking I would have MEN2A, but routine care would start. After tests were completed, it was clear I too had thyroid cancer, spread to some lymph nodes and there was another pheochromocytoma. It was shocking and scary. My new care team in Seattle was amazing though. Everything moved so fast! I had my first surgery in March 2023 and my thyroid plus nymph nodes were removed the next month, along with 2 parathyroids. My brother came to visit me for the first surgery and was shortly after also diagnosed with MEN2A. Thankfully my sister does not have it.
Our two girls of course got tested too. In June, we learned that our youngest daughter also has MEN2A. She had just turned 6 years old. We decided to have her thyroid removed as soon as possible, which happened in August of that same year.
What impact has the diagnosis had on your personal life?
We are now just a year further and, in a way, not much has changed. I do the same things as I did before. I take my daily medication, take my daughter and myself to regular check-ups.
In other ways, life is completely different. Especially for my mom, who already had a long list of health issues, things are not easy. My brother also had a longer recovery road of his thyroid cancer/removal than I did. Our lives will never really be the same. Every time I have appointments, the worries come back more, and there are other things I need to learn to live with that are not always easy. My positive outlook on life comes in handy but is sometimes also the cause of misunderstanding.
Who’s been your hero? Perhaps it was you!
I have so many heroes in my life, it’s so hard to pick but my first people that come to mind are my parents. My mom… she has never been able to stop and still won’t. After all she has gone through and everything she must live with, I admire her strength so much. I still learn from her. My dad, for standing by her and adjusting his life without hesitation. I believe being a bystander and in just 6 months’ time learn that your wife, daughter, son and granddaughter all have a genetic condition that is causing serious health problems must be terribly scary. He is the best dad I could have wished for.
Did you get any help from a patient organization during your journey?
I’m so grateful for doctors and other healthcare professional and organizations like AMEND, that have resources available for patients and family. Thanks to them and others, I see a healthy future for my daughter, with MEN2A.
