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An otherwise healthy medical student wasn’t going to let a rare disease stop him from living life to the fullest.
Dr. David Fajgenbaum was in his third year of medical school when he got so sick he had to be hospitalized for five months. Doctors told him his liver, kidney and other organs were shutting down.
At 25 years old, Fajgenbaum was diagnosed with Castleman disease, a condition that acts like a cross between cancer and an autoimmune disorder. According to the National Organization for Rare Disorders (NORD) there are about 5,000 people diagnosed with Castleman disease in the U.S. each year, making it roughly as common as Lou Gehrig’s disease, also known as ALS.
People who have Castleman disease can experience such things as flu-like symptoms and abdominal pain to the complete failure of multiple organ systems.
“The diagnosis took about 11 weeks, and most of that time I was in the intensive care unit,” Fajgenbaum told Fox News. “I had a retinal hemorrhage and went blind in my left eye. I gained about 70 pounds of fluid and I was so sick that I had my last rites read to me right around the time the diagnosis was made.”
Having a rare disease often means limited information and few if any treatment options.
When Fajgenbaum was diagnosed with Castleman disease there was only one drug currently approved by the U.S. Food and Drug Administration (FDA), but that he relapsed on, leaving him with no other therapy choices.
“When I relapsed on the only drug in development and my doctor told me that there was nothing coming down the pipeline and there were no promising leads, that's when I promised my dad, my sisters, and my now wife that I would dedicate the rest of my life, however long that may be, to trying to cure this disease,” Fajgenbaum said.
In a little more than three years, Fajgenbaum relapsed four times, nearly missing death each time.
Yet with the help of chemotherapy keeping his disease at bay, Fajgenbaum was able to finish medical school and propose to his college sweetheart. But instead of starting a residency, he founded the Castleman Disease Collaborative Network (CDCN), to “drive forward research internationally but also to begin conducting laboratory work.”
“We've made a lot of progress in the last seven years since I started the CDCN and we've invested about $1 million into research, which has led to an additional $7 million in external funding from the government and from non-profits,” Fajgenbaum said.
With experts collaborating together from around the globe and a “relatively limited amount of funding” Fajgenbaum and his organization identified the first novel drug target in 25 years.
“That drug target that we identified, I actually identified it in my lab using my own samples,” said Fajgenbaum, who is also an assistant professor of medicine in the division of Translational Medicine & Human Genetics at the University of Pennsylvania. “I started myself on this drug Sirolimus about five and a half years ago and I've been in remission ever since.”
Fajgenbaum was the first patient to try Sirolimus as a treatment for Castleman disease, but he and his team will test the treatment in a clinical trial scheduled to begin at the University of Pennsylvania later this year.
Fajgenbaum, now 34 years old, with a wife and 1-year-old daughter, chronicled his journey to a cure in a new book, “Chasing My Cure: A Doctor’s Race to Turn Hope into Action.”
“I wrote this book because there's lessons that I've learned about life, lessons about living from nearly dying five times, lessons that hopefully will inspire people to turn their hopes into action and create silver linings in the midst of tough times,” Fajgenbaum said.
Successful entrepreneur Aaron Harvey was around 13 years old when he experienced his first intrusive thought.
“I was playing basketball and was called to come in. When I went to my room and there was a baby sleeping in there, I had a thought of harming the child,” Harvey told FoxNews.com. “At that age, I thought I was maybe psychotic.”
Harvey was not suffering from psychosis, and he was not schizophrenic. He has a form of obsessive compulsive disorder (OCD), known as Pure Obsessional OCD, commonly referred to as Pure O. The condition involves having unwanted thoughts that repeatedly pop into your head whether you like it or not. But unlike a daydreamer’s reverie, these thoughts or images are often violent and horrific, and for people with OCD, the only way to escape them is by doing mental rituals. These rituals or compulsions tend to take place within a person’s mind, so you won’t see someone with Pure O rinsing their hands a hundred times or counting cracks on the streets.
Dr. Anthony Pinto, a licensed psychologist and director of the Northwell Health OCD Center at the Zucker Hillside Hospital in New York, said examples of mental rituals can be as simple as using special words, images or numbers to neutralize intrusive images. Common examples include when a person reviews reasons for why they aren’t a pedophile or a serial killer, and then mentally repeat reassurances to themselves, like “I would never do that,” or “I love my family,” Pinto said.
“They might use these mental rituals like prayer or counting to neutralize that anxiety or to try to make that anxiety go away as a way to cope,” Pinto who is also on the adjunct faculty at Columbia University Medical Center Department of Psychiatry, told FoxNews.com, “except the more you do them, the more you have to do them to lower your anxiety, you become dependent on them.”
Although the exact cause of Pure O is not fully understood, some experts have associated the disorder with genetics or a biological misfiring in the brain.
“It’s an oversensitivity of the brain to reacting to signals that ordinarily would not produce an emergency reaction, but in people with OCD it’s misfiring as if there’s a crisis going on,” Dr. Steven Phillipson, a clinical psychologist and director of OCD Online, told FoxNews.com. “Eighty-five percent of humans in the non-clinical population reports to having these types of associations. But with the OCD subset of [the] population, there’s such a pairing of terror that a person becomes manipulated to believe that there must be something wrong with them— there must be a danger if I feel this threatened or that I might be capable of acting in a violent way.”
Intrusive thoughts can manifest over time and typically fall into three categories: sex, religion and violence. Their frequency can vary from patient to patient, but in Harvey’s case, he was having “hundreds and hundreds” per day.
From sacrilegious images of Christ to confusing thoughts about his sexual orientation, Harvey’s mind continued to play tricks on him into adulthood.
“It started getting really scary for me when my ex moved in, [when] we were engaged,” Harvey said. “A butcher knife would be out on the table and I had a thought of killing her with the knife. I was so scared that I put the knife away to take away the thought.” Harvey explained his unwelcome thoughts eventually led him and his fiancée to begin dining out instead of cooking.
Often, Pure O patients’ nightmare-like thoughts can feel like one continual panic attack.
“Before your logical mind can say, ‘This is not a threat,’ you've already been completely overwhelmed with anxiety throughout your entire body,” Harvey said. “It kind of feels like your stomach is being cut up.”
Harvey never confided in anyone about his evil thoughts. He lived in silence and suffered alone for more than 20 years, a decision that almost brought him to suicide, he said.
“The OCD had really gotten to me at that point, and there was a lot of suicide ideation,” Harvey said. “There was a lot of picking dates and doing dangerous things, which ultimately led me to that first Google search to try to figure out what was going on before I really did something harmful.”
Those Google search results helped illuminate the condition Harvey had been coping with for nearly his entire life: Pure O. But with limited online resources, finding the right type of treatment was an experiment on its own. Mental health professionals continue to debate which therapy remains the most appropriate.
“Traditional therapy, like analysis, is not only ineffective but highly detrimental,” Phillipson said. ”To look into the nature of the thoughts as if there’s some underlying issue going on— or an analyst saying, ‘Oh, if you have thoughts about harming your child, we need to look deeper into your underlining anger issues’— that’s really not what’s going on. They’re still trying to see the thoughts as the problem, which they’re not.”
Cognitive therapy is another common form of treatment that Phillipson advises against. In this type of therapy, therapists try to help patients identify the rational reason for their thoughts. Although the patient might find comfort in a doctor telling them their thoughts are irrational, this approach could make the patient dependent on the therapist’s measurement of what is rational and what is not, Phillipson explained.
Instead of encouraging a greater examination of the intrusive thoughts, Philipson said patients need to train their brains to accept them. He suggested exposure response prevention therapy (ERP), which aims to help patients manage obsessive behaviors.
In ERP, patients voluntarily recall their feared, intrusive thoughts so they can proactively challenge the mental rituals they’ve become accustomed to using to relieve any accompanying anxiety or terror.
“When patients engage in this treatment in a very aggressive way the brain very quickly recognizes that these ideas and this terror experience is no longer necessary to protect so it naturally shuts it down,” Phillipson said.
A study published in the December issue of the Journal of Clinical Psychiatry found 53 percent of patients who had not responded to multiple trials of medication and followed ERP saw their OCD symptoms improve.
Harvey often ruminated about running someone over with his car. He wasn’t aware that one of his mental rituals was putting the car in park whenever he stopped at a stoplight, for the fear of stepping on the gas and killing someone. But after months in ERP therapy, he learned how to react without anxiety.
“So my exposure is to leave the car in drive, and by leaving it in drive, I’m accepting the fact that my foot might fly over to the other side and run someone over, and as a result I’m devaluing that thought,” Harvey said.
Today, Harvey is breaking his silence and has launched IntrusiveThoughts.org, a website dedicated to educating and empowering OCD sufferers. Harvey’s mission to raise awareness of the disorder is personal. He said he doesn’t want kids to suffer alone like he did.
“I could have lived a much different life over the last 20 years— a much healthier and happier life,” Harvey said, “and the only way to do that is to empower sufferers with the condition to actually start talking about them.”
Some studies estimate that up to 1 out of 5 children experience a mental disorder in a given year.
“We need to find ways to get information out about the different forms for OCD [and] that it’s not just the washing of hands— the more stereotypical example of it,” Pinto said. “We need to increase the awareness on the different ways OCD can manifest in the first-line areas where these patients might be presenting symptoms— through the school and primary care physicians.”
Pure O, like the rest of OCD subtypes, is a chronic condition. There is no cure or easy fix, but patients can respond well to treatments and experience periods of remission.
“The goal isn’t for the thoughts to be gone. The goal is for the thoughts to be meaningless and ineffective,” Phillipson said. “Recovery is a state where a person’s brain might produce these associations rather than 40 to 50 times a day, to possibly twice a day, sometimes twice a week.”
For more information visit IntrusiveThoughts.org.