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Home / Business / This medical student was given the last rites before he found a treatment that saved his life. His method could help millions

This medical student was given the last rites before he found a treatment that saved his life. His method could help millions

Lying in a hospital bed at the University of Arkansas, he was suffering from a rare disease. His platelet count was so low that even a slight bump on his body could cause a fatal cerebral hemorrhage. A doctor asked him to write his will on a piece of paper.

Fajgenbaum was brought to a CT. Tears ran down his face and fell on his hospital gown. He thought of the first patient who had died in his care at the medical school and how her brain had bled in a similar way from a stroke.

He did not think he would survive the scan.

But he did it. It turned out that his headache was not a brain hemorrhage – just sinus pressure. The chemotherapy had started.

Fajgenbaum fought Castleman's disease, a rare autoimmune disease that resulted in the overgrowth of cells in the lymph nodes of the body. It was not the first time a relapse threatened his life. Massive chemotherapy with "shock and awe" had helped him flee just before death in four previous attacks, but any new attack on his body weakened him.

"You learn a lot when you almost die," he says.

He learned enough to surprise his doctors with a way to treat his illness. Almost six years later he is in remission, he and his wife have a little girl and he dedicates his medical career to the salvation of other patients like him.

The 34-year-old Fajgenbaum reports in his new book "Chasing" on his near-death and his remarkable recovery My Healing: A race of doctors to put hope into action.

His story contains lessons for the future of rare disease research ̵

1; and for life.

His first love was football.

As a boy in Raleigh, North Carolina, Fajgenbaum spent the Saturdays on the sideline watched the NC State Wolfpack with his father, the team's doctor.

At age 7, he became obsessed with becoming Division 1 athlete The walls of his bedroom were covered with football playing cards.

  David Fajgenbaum trains for football at Georgetown University.

[19659010] He realized his dream and made the football team of Georgetown University as quarterback.But during his sophomore year of 2004, his mother died of cancer.

Being obsessed he focus became stronger and stronger. He learned to appreciate the precious moments of life and to understand that bad things can still happen to good people.

"I know people deserve more miracles than I am who did not get them," he says.

Fajgenbaum then completed his master's degree at Oxford University, where he learned how to conduct scientific research to combat the illness his mother brought with him.

This relentless focus and scientific accuracy would someday save his life.

In the medical school, a rare illness almost killed him.

Fajgenbaum entered the medical school of the University of Pennsylvania to become a doctor. Like his father, especially an oncologist, in honor of his deceased mother.

In his third year, 2010, he became very ill and was hospitalized for five months. Something attacked his liver, kidneys and other organs and closed them.

The diagnosis was idiopathic multicenter Castleman's disease.

Castleman was first described in 1954 and presents itself in part as an autoimmune disease and partly as cancer. It is about as rare as ALS – in the US there are about 7,000 new cases each year.

The disease causes certain immune signal molecules, so-called cytokines, to overdrive. It's like using combat aircraft for all-out attacks on home territory.

Fajgenbaum's doctors knew his body was in a civil war, but they had questions about how and why.

  Fajgenbaum's book, a report on his illness and recovery, appeared this week.

19659010] In his hospital bed Fajgenbaum felt sick and weak. His organs failed and he noticed strange red spots on his skin. But his doctors, who were focused on saving his life, were not interested in these "blood moles."

He asked every new doctor who came to his room what the blood mole meant.

"They went their way saying that they did not matter," says Fajgbenbuam. But the medical student who had become a patient would continue to prove that he cares about something.

"Patients take things that nobody else sees," he says.

He suffered life-threatening relapses.

Fajgenbaum met Castleman's disease four more times in the next three years, with hospital stays between weeks and months.

But even with one of the best Castleman specialists treating him, there were many unknowns. Fajgenbaum remained alive only through intensive chemotherapy campaigns with "carpet bombs".

Repeatedly facing death, he grieved most for the memories he had not yet memorized: graduating from medical school, marrying his college sweetheart, and looking at his son or the eyes of a daughter.

  David Fajgenbaum poses with his father during one of his hospitalizations.

] During a relapse in a Duke University hospital, his family called a priest to read him his last rites.

After all the setbacks, all the organ failure, all the chemo, Fajgenbaum worried that his body would just break. [19659003] Despite four hospital stays, he managed to graduate from the medical faculty. His life depended on it.

He Had to Change the Way Medical Research Is Run

Instead of starting an internship like most of his classmates in medical school, Fajgenbaum started an MBA at the Penn & # 39; ; s Wharton School

He also founded the Castleman Disease Collaborative Network, a global initiative to combat Castleman's disease. Many of his classmates from Business School joined in the event. Fajgenbaum believed that adding a mindset as CEO would allow him to broaden his approach to self-healing.

In order to coordinate labor exchange efforts, he had to complete every course "Negotiation, Strategic Decision Making, and Management Economics" that I took at the Business School, "he wrote in his book.

Started by the CDCN He brought together the world's best Castleman disease researchers to meet in the same room, and his group worked with doctors and researchers, as well as patients, to prioritize the studies that needed to be carried out the soonest.

Instead of applying for scholarships, vote

  A recent photo of Fajgenbaum in his office at the University of Pennsylvania.

Fajgenbaum also prioritized clinical trials involving drugs approved by the FDA already approved as safe, rather than starting with new connections from the beginning.

In the meantime, he never knew if the next relapse could finally kill him. To ward her off, he flew to North Carolina every three weeks for chemotherapy.

Still, he suggested to his college friend Caitlin Prazenica that she give her a niece's letter to her "aunt" Caitlin, "who said in part," I'm a really good flower girl. "

" The disease was not an obstacle for me, "says his current wife," I just wanted to be together. "

However, in late 2013, Castleman struck again and landed him at this hospital in Arkansas he was the closest.

He Pioneered

Before he and Prazenica could send their postcards, Fajgenbaum set about saving his own life.

After examining his medical charts he noted that more than 60 years after the discovery of Castleman's disease, researchers had not yet discovered anything.

A protein called vascular endothelial growth factor, or VEGF, increased 10 times its normal level. In the medical school, he had learned that VEGF controls the growth of blood vessels, and he suspected that the bloodsuckers that had appeared at every Castleman relapse had a direct blood count These were protein spikes that signaled to the immune system to take action. He also knew that there was an immunosuppressive drug called sirolimus, which was approved by the FDA to combat the immune system's activation against kidney transplants.

After consulting with an expert from the National Institute of Health, Fajgenbaum asked his doctor to prescribe the drug. He picked it up in February 2014 at a pharmacy less than a mile from his apartment.

"A drug that could potentially save my life was in sight," he says.

  Fajgenbaum with his wife Caitlin and her daughter Amelia. The couple was married in 2014.

As far as it works. Fajgenbaum has been in remission at Castleman for more than five years. He's not the muscular footballer he once was, but he's almost in full strength.

After three months on Sirolimus, he and Caitlin were married in a ballroom in Philadelphia, whose joy was enhanced by memories of their struggles.

Fajgenbaum is Now he is Assistant Professor of Medicine at the University of Pennsylvania. He leads a research lab and enrolls patients in a clinical trial for the drug that returns their lives.

Just in time for … he finished the draft of his book in the August 2018 birth of her daughter Amelia.

"It's such a little miracle," says Caitlin Fajgenbaum. "We are so happy to have her."

His research approach applies to all rare diseases.

According to Global, there are 7,000 rare diseases that affect 400 million people around the world. And only 5% have FDA-approved treatment.

Fajgenbaum says there are tremendous opportunities for him and others to change that.

"Because so little time and money has been invested in these diseases, there are many hanging fruits," he says.

His efforts have become aware of the Chan Zuckerberg initiative, Facebook co-founder Mark Zuckerberg and his wife Dr. Ing. Priscilla Chan have launched to treat all diseases caused by the disease, treat and prevent it at the end of the century.
Tonia Simoncelli, the organization's science policy director, told CNN that she emphasized Fajgenbaum's CDCN as a model for uniting a community to ameliorate a rare disease.

"I have never seen anyone dealing with this level of organization with a disease" , she says. "He did not wait for the stars to align, he straightened them out."

The research for many rare diseases suffers because there is no disease-wide plan and no "quarterback" to lead it, says Simoncelli.

Over the past 10 months, Fajgenbaum's group and the CZI have collaborated to help rare disease communities bring together patients, researchers and physicians to enable the right research to be conducted as quickly as possible.

"Part of his brilliance is that his model can be transformed into a series of steps," says Simoncelli.

Fajgenbaum hopes his story will teach far beyond medicine what people can do when they lean against a wall.

And he feels that his suffering means something when he looks his patient in the eye with Castleman's disease. A girl named Katie was diagnosed at the age of 2 and had to be hospitalized 14 times.

Her doctor then prescribed Fajgenbaum's drug after the family had contacted the CDCN. Katie has not been hospitalized since and has just completed nursery school. She even learned to ride a bike.

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