- Miranda Edwards has been living with a rare, terminal disease since 2014.
- She said she's learned how to thrive despite her prognosis and metastatic tumors.
Miranda Edwards hunched over her laptop at 3 AM, furiously searching for a doctor who would help her. She had recently turned 24 years old and learned she had a terminal illness, but she was sure more could be done to prolong her life.
She had recently been diagnosed with metastatic pheochromocytoma, a rare type of tumor that produces adrenaline and causes heart-pounding attacks that were first dismissed as anxiety. After her tumor triggered a heart attack and multiple strokes, Edwards had surgery to remove it in. But while some pheochromocytomas can be successfully removed with surgery, her tumor came back and spread. In November 2014, doctors told her she had only one to five years left to live.
Almost a decade later, Edwards, now 32, is still alive — and she's learned to thrive despite her diagnosis.
"I want people to understand that yes, I have a terminal disease. But my life is worth fighting for just the same as everybody else," she said."Regardless of my technical prognosis, I can still live 20 more years."
Through her social media accounts and blog, Edwards said she's determined to raise awareness about the signs of pheochromocytoma after she was misdiagnosed twice.
"Self-advocacy is your superpower," she said. It's one of many lessons learned in her decade-plus of living with tumors on her adrenal glands, liver, and diaphragm.
Here are 3 more pieces of advice she has for other patients.
1. Don't be shy when it comes to fighting for your life
When doctors learned that Edwards' tumor had not only come back after surgery, but spread to other organs, they told her that they could not remove all of the growths. Instead of taking no for an answer, she found a doctor who would undertake a massive surgery to de-bulk the tumors.
That surgeon's diligence — and Edwards speaking up for herself — helped buy her more time than her first medical team could have imagined.
"It can be so intimidating to speak up," she said. "But when it comes to advocating for ourselves, we have to be okay with some discomfort."
Edwards has become her own best advocate for her health: She double-checks her lab results, looks for trends in her symptoms, and stays up-to-date on the latest research. Most importantly, she's not afraid to ask questions, whether it's about a medication's side effects or running a blood test again.
2. Learn how to take care of you
Soon after getting diagnosed, Edwards made a promise to herself: "I knew this disease would change me, but I couldn't let it take away who I am," she said.
Self-care looks different for everyone. For Edwards, it means her bedside is littered with makeup tubes, not pill bottles. She has a growing wig collection and enjoys getting glam just for fun. Sometimes, when she is too sick to go out, she said her husband will bring home new clothes for her to try on at her own pace.
"I adapt my self-care needs to each season of my life," she said. "What I did for myself when I was bedridden looks different than today."
While not everyone gets the same joy from watching makeup tutorials, Edwards said anyone can start by making two lists: Some small acts of self-care to follow on days that you're in bed, and another list of things to accomplish when you can be more active.
3. Find your community
At the lowest points of her illness, Edwards relied on her small but mighty in-person support system. Her husband has been by her side the whole time — they started dating during her first hospitalization — and she said he's become her best advocate when she's too sick to speak for herself.
Turning to online communities for people with pheochromocytomas has also been a source of strength and support, she said — although her terminal status among a group of people with an often-treatable disease makes her feel like an outsider at times.
"I still know that this disease is incurable," she said. "But my husband and I have worked so hard to change what my quality of life can look like. We've always expected and demanded more, and never accepted what we're told."