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Rare Disease Patient Receives Life-Changing Care

August 30, 2021
Rare disease patient

One Disaster After Another

Marsha has suffered multiple medical issues throughout her life. However, she was determined to “lead a ‘normal’ life.” She graduated from high school, went to college for her Bachelor of Arts degree, and got her first entry-level job shortly after college. “From there,” said Marsha, “one door opened after another.” She married at 28 years of age, and dreamed of having a large family. 

However, these accomplishments didn’t cancel out her health struggles. One day, the situation got much worse. She was diagnosed with endometrial cancer. This prevented her from having any children. “My dream of a large family was ripped away in the blink of an eye,” said Marsha. On top of this, she struggled with a tangled string of illnesses.  

Marsha had no idea as to why this was happening. She would have surgery to correct one problem, only to end up with complications that required another surgery. “The list of surgeries just kept getting longer and longer,” Marsha said. 

Cowden's Syndrome Strikes

Unfortunately, Marsha’s battle continued. In addition to endometrial cancer, she was diagnosed with thyroid cancer. This left her with even more questions. She had no family history of various types of cancer. Her doctor sent her to a genetic counselor. 

“After filling out pages of information and having an exam,” said Marsha, “I was told that I had Cowden’s Syndrome.” Cowden’s Syndrome is a rare genetic disorder, found in 1 out of every 200,000 individuals. It causes cell reproduction to kick into overdrive, causing both benign and malignant tumors. This explained why Marsha suffered with one problem after another. 


It is said that in thunderstorms, lightning never strikes the same place twice. But in this genetic storm, Cowden’s syndrome had struck Marsha too many times to count. 


Through Storm Clouds...

Marsha’s quality of life deteriorated even further. She lost her job, her marriage ended, and she had to live off disability payments. “Over time, it just wasn’t enough to support me with the cost of health insurance, medications, and so on.” 


Unable to cover basic living expenses, Marsha moved in with her mother. “My mother has been my biggest supporter, my rock,” said Marsha. “She’s been there for me when nobody else has.” 


Marsha and her mother visited various hospitals for six months. They began to count how many times the doctors said, “I’m sorry you’re sick and in so much pain, but we can’t help you.” The number of rejections was around 15.


Marsha continued looking for answers – and then a door opened. Mayo Clinic had a specialist who could treat Cowden’s Syndrome. But the door seemed to close soon afterwards. Marsha and her mother couldn’t pay for the long-distance round-trip. How would Marsha get to Mayo Clinic? 



...Into Sunrise

At a critical point, Marsha heard about Mercy Medical Angels. She received a round-trip ticket to and from Mayo Clinic. “Mercy Medical Angels bridged the gap,” said Marsha, “making it possible to find my hope!” She has gone back and forth three times, each time with assistance from Mercy Medical Angels. 



“Slowly but surely, I’m getting answers and seeing improvements,” said Marsha. “None of this would have been within my reach if it weren’t for the hard-working staff at Mercy Medical Angels, and the generosity of donors.” 


"You're Changing The World..."

When asked how she would describe her experience with Mercy Medical Angels in one word, Marsha doesn’t have to think for long. “That one word would be compassionate,” said Marsha. “Every person I’ve had contact with has been so warm-hearted, empathetic, and caring.” 



Marsha has a message for donors as well. She wishes that she could hug everyone who donates to Mercy Medical Angels. “You’re changing the world,” she said, “and you sure changed mine!” 


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