A young father-of-six who has been diagnosed with an ultra-rare skin disease has been given just six months to live as his body is overwhelmed with painful lesions.
Ryan Becker, a lawyer from Spokane, Washington, has been battling the undiagnosed skin disorder for over three months. It is getting dramatically worse by the day and baffled medical professionals at America’s top hospitals.
His illness hasn’t just affected his body; it has also impacted his mental clarity and decision-making, he and his wife told DailyMail.com.
Dating back to June of last year, he began feeling extremely fatigued almost all the time and had begun developing serious acne on his back. By January, he’d developed the first major sore on his leg, which started out red but soon morphed into a terrifying black.
As of Wednesday last week, 40 to 50 percent of his skin was covered in sores. In just the last several days, he has developed five more wounds on his stomach, at the top of his right arm, and on the palms of his hands.
The first wound in January coincided with a major personality shift, according to Mikkel Becker, his wife of one year.
At that time, he lost $25,000 of her retirement money by purchasing Tesla stock option contracts that went bust after ‘Elon sent a tweet,’ Ryan explained.
Ryan Becker and his wife Mikkel are pictured with their kids at Disney World. Soon after this, he would get his first skin sore
Dermatologists believe Ryan, 38, has a never-before-seen form of pyoderma gangrenosum, a disorder that typically leaves sores only on the legs. He has developed sores on his arms, back, chest, stomach and even the on the palms of his hands
‘January is when Ryan started to do dumb stuff he would never have done, like gambling my retirement [on a risky investment],’ said Mikkel, who has a four-month-old baby named Atlas with Ryan. ‘Then that’s the day that one of the first sores on his legs showed up.’
Dermatologists say their best guess is that Ryan, 38, has a never-before-seen form of pyoderma gangrenosum, a disorder that typically leaves sores only on the legs and is treatable with steroid therapy.
But neither is true for Ryan. The sores have spread to nearly every corner of his body and doctors have not been able to find an effective form of treatment for him, even as he reports being in agony for large portions of the day.
Mikkel said his sores cause him ‘burn victim level pain.’ She added that nearly all the doctors they’ve seen have been shocked by his sheer number of ulcers and the severity of them.
‘Everywhere we go with Ryan, doctors are in shock, awe and horror. I mean, they can’t hide it on their faces. They’re trained to not show any expression, but when they see Ryan, it’s just like, “Oh my god,”’ Mikkel said, adding that they often go and get second, third and even fourth opinions from their colleagues.
He sought help at the Mayo Clinic in Minnesota and a Johns Hopkins-affiliated hospital in Washington, D.C., but still remains without answers he desperately seeks.
Although his prognosis is still unknown — given that pyoderma gangrenosum remains poorly understood by scientists — Johns Hopkins gave Ryan the grim prediction in February that he likely has six months to live.
Ryan said his latest test results have led the heartbroken family to believe that he’s going to die ‘a slow, painful death.’
‘There’s no cases that any of the dermatologists that I’ve talked to that have seen it spread to the legs, the torso and the arms,’ he said.
Ryan’s sores first show up as red marks on his skin. They then get raised and blister before popping
After that, the sores become necrotic, meaning its essentially a mass of dead skin
And with each new sore that appears, he goes through the same grueling process each time.
‘So what happens is, they get red, they get raised, they blister, then they pop, then they go necrotic,’ Mikkel said.
When skin or any other tissue enters a ‘necrotic’ state, it essentially means that the cells have died due to a lack of blood flow. This is also when the skin turns dark black and almost looks like frost bite.
Necrosis can be extremely painful and presents with symptoms such as a fever, sensations of ‘crackling’ under the skin, and brain fog.
Ryan freely admits that in his case, it has gone far beyond brain fog or just normal confusion.
Even though the first sores appeared in early January, it wasn’t until early February when Mikkel realized it was time to go to the emergency room.
‘I woke up to him having a seizure in the bed. And I’m trying to stop him from hitting his head on the bed. And his hands are flailing everywhere and he, you know, accidentally punches me in the face,’ Mikkel said.
At this time, he had also developed a chest wound ‘in the shape of a heart,’ Mikkel said.
Ryan said he doesn’t remember that seizure at all, but Mikkel said he started having them during their family trip to Disney World from December 31 to January 7.
Ryan Becker is pictured in a hotel room ahead of his visit to the Mayo Clinic with his wife Mikkel and four-month-old baby Atlas
Once at the Providence Sacred Heart Medical Center in Spokane, the couple said Ryan was loaded up with a massive cocktail of drugs.
They say he was given corticosteroids intravenously, a treatment typically given to deal with inflammation. Experts also say that high doses of these types of steroids can lead to psychosis.
‘I was definitely in a state of acute psychosis,’ Ryan said. ‘I was like, “I must have murdered someone or something” … I thought all the nurses were involved in it, that it was a sting operation, that I was gonna go to sleep, and they were gonna arrest me. But then also, my parents were into organized crime.’
Mikkel and Ryan both said he believed Mikkel was an FBI agent and that his stepdaughter Reagan was a CIA agent.
After that, Ryan said he agreed to be given Dilaudid, an opioid weaker than fentanyl but stronger than morphine, and Haldol, a powerful antipsychotic used to treat schizophrenia.
‘They kept me sleeping, at least I thought they did. Apparently, I sleep-walked,’ he said.
Over the last month, Ryan and Mikkel have been traveling around the country searching for a cure to his unusually aggressive disease. Their baby has been with them every step of the way
Mikkel said that while she appreciated the doctors’ efforts at the hospital in their home city, she fears their treatment was below what was needed given the severity of his condition.
Ryan and Mikkel thought their fortunes had turned around when the Mayo Clinic in Minnesota squeezed them in.
But according to them, their arrival at the world-renowned health facility was the start of an entirely new nightmare when he wasn’t taken seriously.
The couple say doctors began making suggestions that weren’t true, and it was briefly believed he was suffering from factitious disorder, better known as Munchausen syndrome, a condition where someone intentionally harms themselves to gain attention or affection.
‘They completely stopped treating me,’ he said, which he said included heavily reducing his course of painkillers.
‘A resident said, “So we believe you’ve been using substances… and you’re causing these wounds yourself. So, we’re going to go ahead and discharge you.
‘I’m like, “How in the world do you think I’m causing these wounds by scratching myself?”‘ Ryan recalled saying.
Mikkel said they had to jump through a lot of hoops to get the misunderstanding corrected, and their version of events was solidified when Ryan’s urine test came back negative for drugs.
Ryan reports having extreme pain from the sores on his body as well as fatigue dating back to June of last year, before he even had any breakouts on his skin
She also said she had to repeatedly tell doctors that she was with her husband 24/7 and would know if his wounds were self-inflicted.
When asked about Ryan’s experiences, the Mayo Clinic declined to comment, citing patient privacy concerns.
After two weeks at the Mayo Clinic, the couple along with their baby got on another plane bound for Johns Hopkins Sibley Memorial Hospital in Washington, D.C.
Doctors at the hospital, which partners with the National Institute of Health’s Undiagnosed Diseases Program, did not believe Ryan had factitious disorder or had a drug problem, the couple said.
That much was a comfort, they said, but their trip to Johns Hopkins yielded no more answers to why Ryan’s case of pyoderma gangrenosum is so unusually aggressive — or why he is one of the few patients with the disease who could die from it.
There’s also no indication of what causes his sores to appear, though scientists who have studied the disease suspect it could be autoimmune-related.
The uncertainty that surrounds every aspect of Ryan’s fast-progressing disease is what spurred them to travel across the country to the top medical institutions.
That has also had the downside of taking Ryan and Mikkel out of the workforce, which will threaten their access to their employer-sponsored health plans in the coming months.
To deal with Ryan’s ongoing medical bills, the family has set up a GoFundMe that has raised more than $33,000 so far
Ryan works as a project inspector for the Spokane County building department. He was originally under the impression that he’d have to return full-time by April 1, otherwise, he’d have to pay roughly $3,000 per month for COBRA coverage.
His job has since worked out a deal with him that it will keep his family’s benefits intact through August as long as they contribute to the health plan.
Ryan doesn’t have only himself to worry about. He has six children ranging from a four-month-old son to a 17-year-old daughter who need health coverage too.
On top of possibly losing coverage, he recently received an unexpected medical bill from the Mayo Clinic.
It sent Ryan a letter stating that his stay was not covered by his health insurance and that he would be responsible for his remaining balance of $100,000.
Ryan is afraid that Johns Hopkins will do the same thing, though he hasn’t received any denial of coverage correspondence from them yet.
So far, the family has raised more than $33,000 on GoFundMe.
On Tuesday night, Ryan and Mikkel were on their way to Portland from their home in Spokane to see one of the world’s foremost experts on pyoderma gangrenosum.
Ryan and Mikkel are currently on their way to see Dr. Alex Ortega-Loayza (pictured) who is one of the world’s foremost experts on pyoderma gangrenosum
Dr. Alex Ortega-Loayza is a dermatologist at the Oregon Health & Science University Hospital, where he assembled a team of scientists, biostatisticians, and clinicians to specifically study pyoderma gangrenosum.
Ryan is scheduled to see Dr. Ortega this week.
In the meantime, Ryan and Mikkel haven’t lost their optimism or sense of humor, with the couple joking that he has ‘zombie skin,’ a fear he eerily predicted on his Bumble profile back in the day.
‘I think we met on Bumble, right? He had on there, what’s your greatest fear?’ Mikkel explained.
‘And he said,’ Mikkel started before Ryan interjected, ‘to have a condition that causes a zombie apocalypse to be named after me.’
‘Now he’s like, “Oh my God, my skin is like zombie skin now!”’ Mikkel said.
