Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Results for search term "rare disease".

EDITORIAL

Difficult Diagnosis Interrupts Residency, Gives Young Doctor a New View of Patient Care

Successfully finishing a medical residency is a significant milestone in any physician's career. But when Natalie Ertz-Archambault, M.D., graduated in June 2016 from the Internal Medicine Residency at Mayo Clinic's Arizona campus, the achievement felt particularly sweet. "It was an incredible success for me, since I actually started my residency… [...]

EDITORIAL

Unable to Outpace Tumors, Karen Ramsey Fights Back With Attitude

Courage. Optimism. Acceptance. Those are just a few of the attributes that define the determination of Karen Ramsey, whose rare medical condition makes her a member of an exclusive club. One to which she would much prefer not to belong. Karen has Von Hippel-Lindau syndrome, or VHL, in which a… [...]

EDITORIAL

Diagnosis and Treatment for a Rare Disease Brings Back Trish Byrd’s Hearing and Optimism

In spring 2016, Trish Byrd went deaf. And no one knew why. With constant ear pain and unable to hear, Trish saw seven different doctors in her home state of New Mexico. After months of treatment, there was no improvement in her symptoms. “I kept asking, ‘What’s wrong with me?’”… [...]

EDITORIAL

Florida Chef Finds Expertise to Manage Rare Disease, Get His Life Back

When 67-year-old Stefan Gyorkos of St. Augustine, Florida, noticed swelling in his feet several years ago, he didn't think much of it. After all, as chef at a local golf and country club, he is on his feet for hours at a time. That seemingly innocent ailment, however, would eventually… [...]

EDITORIAL

Surprise Diagnosis Spurs Learning Curve, Search for Help

Diagnosed with a rare disease, livedoid vasculopathy, Cheryl Sturdevant turned to Mayo Clinic for help. Then she turned to helping others. When Cheryl Sturdevant found out she had livedoid vasculopathy, she had no idea what it was. An uncommon disorder, livedoid vasculopathy affects the skin. For no clear reason, it… [...]

EDITORIAL

Putting the Pieces Together to Solve Medical Mystery

Kim Goranson knew something wasn't right. For more than 10 years, she endured exhaustion, pain and bouts of confusion. But to her frustration, repeated medical evaluations revealed nothing. A high-energy real estate agent in Lincoln, Nebraska, Kim saw her successful career slip away as the symptoms took a heavy toll… [...]

EDITORIAL

Coping with a Rare Disorder: Cronkhite-Canada Syndrome

David Hirschy of Prescott, Arizona, has worn many hats — from record producer to chef to silversmith. In fact, his love of food made him think something was wrong a few years ago when he lost his sense of taste. He began to have other symptoms, too, which led him to… [...]

EDITORIAL

Patient with “Double Trouble” Diagnosis Finds Answers at Mayo Clinic

Being diagnosed with multiple myeloma, a serious blood cancer, is difficult enough to accept. But being told that you also have a rare hematologic condition called amyloidosis — a disorder that could prevent you from receiving the bone marrow transplant necessary to combat your myeloma — could put anyone’s strength to the… [...]

EDITORIAL

From the Alaskan Woods to Top of the Transplant List

The first sign something was wrong came when Dennis Chavez was out hunting caribou with his wife, Maria. The Wasilla, Alaska, native suddenly found that he couldn’t cover ground like he used to. He quickly became winded — much more quickly than he expected. He ignored the signs for a… [...]

EDITORIAL

Waldenström Macroglobulinemia: Integrated Treatment and Research at Mayo Clinic

Earl Nolting was diagnosed with Waldenström Macroglobulinemia (WM) in 2000. WM is a rare disorder involving enlargement of the liver and spleen associated with anemia, nose bleeding, and an abnormal blood protein. After his diagnosis, Earl joined a WM support group, which led him to Mayo Clinic. At his very… [...]

EDITORIAL

Award-Winning Photojournalist Documents Mayo Clinic Experience

Sharing Mayo Clinic is a place for patients and employees to share their Mayo Clinic stories. Often patients submit them by email, or as a comment on one of the posts. Sometimes we have patients call us when they are on campus, and our team can capture their story via… [...]

EDITORIAL

Rare treatment for rare disease: Triple transplant

On June 14, 2011, after a 107-day wait in the hospital at Mayo Clinic in Rochester, Minn., Kirk Watson, 44, received the news he’d been waiting for — a heart, liver and kidney were available for him. He would be the fourth person to receive a triple transplant at Mayo… [...]

EDITORIAL

Myasthenia gravis - Early detection and right treatment

James (Jim) Miller wasn't sure if it was just part of the normal aging process or if retirement wasn't agreeing with him. Whatever the reason, it became nearly exhausting for him just to eat. A native of River Falls, Wis., Jim had recently retired from his job in health care… [...]

EDITORIAL

Research forges path to effective treatment for sclerosing mesenteritis

With more than three decades of experience as a nurse and nurse manager, Carol Bolton of Exeter, Calif., was acquainted with most medical conditions. But in 2004 when she began experiencing abdominal pain along with episodes of diarrhea or constipation, she was baffled by what it could be. Most likely,… [...]

EDITORIAL

Rare brain tumor couldn't stop her

When your body needs water, you feel thirsty and drink. It's a pretty simple concept, but one that no longer works for Laurie Beach. A rare brain tumor left her with adipsic diabetes insipidus, an extremely rare disease that causes the body to lose its thirst response. The tumor —… [...]

EDITORIAL

"From worst to first" after kidney cancer surgery

"At 45, I was too young to plan my own funeral," says Jasper Johnikin, an apartment complex maintenance supervisor from Milwaukee, Wis. But that's exactly what Jasper was contemplating one holiday weekend several years ago. "I'll never forget it," he says. "My doctor called me on Memorial Day and told… [...]

EDITORIAL

Unraveling the Mystery of Semicircular Canal Dehiscence Syndrome

Imagine listening in real time to the thump, thump of your own heartbeat, the rush of your blood pulsing through your veins, and even the slightest twitch of your eyes - all in surround sound.  Those are but a few of the symptoms that Wendy Tapper was experiencing when she… [...]

EDITORIAL

Cameron's New Way Forward After Rare Disease Diagnoses

Cameron Kaipainen with his mom and dad, Michele and Aron. Cameron Kaipainen and his parents spent years searching for explanations to his ongoing and confusing medical problems. It wasn't until arriving at Mayo Clinic in Arizona that the true nature of Cameron's condition was uncovered, giving the family the priceless… [...]

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