Finding Resilience in the Toughest Times
- Miranda Edwards, 32, was diagnosed as a teen with a rare tumor called a pheochromocytoma – a type of neuroendocrine tumor that grows from chromaffin cells, which are found in the adrenal glands and produce hormones needed for the body.
- She suffered with symptoms for years that doctors dismissed as anxiety.
- Edwards is sharing her story so others will come to understand her disease and know when to push for answers.
- Miranda Edwards is like many of the resilient people SurvivorNet has had the privilege of getting to know. If you’re in need of more inspiration from other cancer and rare disease warriors, check out Shennea Dixon and Eduardo Garcia‘s stories.
Edwards started struggling with her health as a teen. She often got sick and had trouble sleeping at night, but things didn’t get too crazy until she turned 19. That’s when the constant headaches, heart palpitations, sweating and vomiting began to consume her life.Read More
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Over the years, Edwards continuously brought her concerns to doctors. But she kept being told anxiety was to blame. Then, she had a horrifically painful heart attack at 19 years old.
After a four-day hospital stay, Edwards was discharged while doctors were still doubting her reported symptoms. But a phone call that came shortly after led to her admittance to a cardiovascular health center and a resulting diagnosis of a rare tumor called a pheochromocytoma – a type of neuroendocrine tumor that grows from chromaffin cells which are found in the adrenal glands and produce hormones needed for the body.
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Pheochromocytomas are usually benign (noncancerous), but they are capable of becoming cancerous and spreading to other parts of the body – only in about 10% of cases, according to the National Cancer Institute. Some people, like Edwards, may feel intense symptoms that last for a short period of time, called “paroxysmal attacks.” These symptoms can include high blood pressure, headaches, irregular heartbeat and sweating.
From Rare Tumor Warrior to Cancer Thriver
Edwards underwent surgery to remove her tumor for treatment. This effort proved to be unsuccessful, however, when her symptoms returned just a year later. She began having “paroxysmal attacks” again, and even gained 45 pounds in three months.
@pheovsfabulous READ! full story: link in my bio. Thank you to everyone who’s helping turn my pain into purpose 🙏🏼 we’re being heard zebras! 🦓 #fyp #anxiety #medicalgaslighting #awareness #pheochromocytoma #rarecancer #medicalzebra #incurablecancer #insidernews ♬ Emotional Piano Instrumental In E Minor – Tom Bailey Backing Tracks
“I knew with every fiber of my being that something went wrong, or something had come back,” she said. “It was like I went back into a twilight zone where everybody didn’t believe me again.”
Fast forward another four years, an MRI revealed the worst – Edwards’ disease had become cancerous and spread throughout her body.
“The fact that it had the opportunity to go to my liver and become aggressive was purely due to the delay in diagnosis,” Edwards said.
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She was given a poor prognosis, but the now-married 32-year-old is not letting poor statistics get her down. She’s become very active online with a blog documenting her life as a cancer warrior.
“My blog is to educate whoever will read it about the disease that I am fighting, malignant pheochromocytoma,” she wrote. “It’s to spread awareness about a disease that is lethal but is so rare and so under researched/funded, my hope is that more and more people can even just recognize the name when they see it.
“Hopefully in the meantime they will find a way for it not to be a death sentence for people like me one day.”
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Edwards has also become a viral TikTok star. Her bio of “Terminal & THRIVING” perfectly encapsulates the effervescent energy and inspiring resilience that social media users have come to know and love from Edwards.
“Not everybody is as vocal and open with their suffering as I am,” she told Insider. “You have these people who are suffering in silence, and their loved ones are not believing them because the doctors are saying they’re fine.
“What I’m sharing requires you to fight like hell for yourself, but not everyone has the ability to do that.”
Finding Resilience in Adversity
Here at SurvivorNet, there’s no shortage of inspiring stories from cancer and rare disease warriors – Miranda Edwards’ story being one of them.
Shennea Dixon is another rare disease warrior that deserves a shout-out. She was diagnosed with Von Hippel-Lindau Disease (VHL) after the active young woman suffered from headaches, back pain and intense abdominal pain. VHL is a genetic condition characterized by tumors, either cancerous or noncancerous, and cysts arising in various parts of the body.
Shennea Dixon Was Diagnosed With A Rare Disease Called VHL As A Teen — Here’s The Inspiring Story Of How She Found Strength In Adversity
Dixon had to fight for proper care and a necessary surgery that left her struggling to walk. Still, she’s always stayed positive and fought for her health.
“I come from a long line of strong, independent women and I wasn’t gonna stop with me,” she said. “The best advice I could give anyone that’s diagnosed with VHL would be that you have to be an advocate for yourself.
“You have to stand up for yourself and not be afraid to ask questions.”
Another resilient disease warrior we’ve gotten to know is Eduardo Garcia. He was on a hunting and fishing trip through the Montana backcountry in 2011 when a chance encounter with an old electrical junction box changed his life. After suffering from a severe electrical shock of 2400 volts, Garcia lost an arm and nearly his life.
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Once he arrived at the hospital, doctors discovered another serious problem – testicular cancer. After chemotherapy and reconstructive surgeries, Garcia is now a cancer-free chef who cooks up delicious meals using a prosthetic arm.
“Everyone that has encouraged me, and supported me, and forgiven me, and held me accountable has brought me to today and how I make my life moving forward,” he said in SurvivorNetTV’s award-winning documentary Charged – The Eduardo Garcia Story.
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