Skokie A man with two diseases hikes at the top of the Pacific Trail.

Adam Rubenberg hikes the nearly 2,650-mile Pacific Crest Trail, hard work for most people, while managing two currently incurable diseases.

The 25-year-old set off from Skokie on March 8 to hike across California, Oregon and Washington, starting at the Mexican border and walking north to the Canadian border. His mother, Amy Rubenberg, said Monday he may be home as soon as September 25, partly because of the wildfires in the West and partly because of a health setback.

He said earlier in a phone interview from a town near the track where he stopped for an IV injection that he cycles between 12 and 25 miles a day, depending on the terrain and how he feels, and carries a backpack that weighs about 30 pounds.

Rubenberg has Crohn’s disease, a type of inflammatory bowel disease estimated to affect more than half a million people in the United States. He also has primary sclerosing cholangitis, a rare disease that attacks the bile ducts. About 50,000 people in the United States have PSC, and the majority also have IBD, according to information from UChicago Medicine, where Rubinberg is treated.

Robbenberg takes 17 pills a day — mostly for PSC, some for mental health issues like ADHD and depression, he said — and occasionally struggles with back pain.

To treat Crohn’s disease, he must stop every four weeks for an intravenous injection. There is no FDA-approved treatment for PSC, which claimed the life of great Chicago Bear player Walter Payton in 1999. However, Rubinberg is participating in a two-year clinical trial that began in October 2020 at UChicago Medicine to evaluate the effectiveness of the drug clefexor on patients PSC. Because it is a double-blind study, neither Rubenberg nor his doctors know whether he was taking the drug or a placebo. Rubenberg said he has been feeling much better, and that his liver enzymes have been within the normal range since late last year.

“I am very fortunate to be in good hands,” he said during a phone interview a few weeks before in Dunsmere, California, where he received an IV injection.

“The fact that I’m still here, after all that’s happened to me – that alone says a lot,” he said. “Some days I want to quit, but I will only do it if I feel this way consistently for a week. Other times, I feel so happy and grateful.”

Rubenberg was diagnosed with both diseases in 2019 after taking a blood test at the insistence of his mother, who noted his fatigue and loose bowel movements. Elevated liver enzymes led to more tests before a final diagnosis.

Rubenberg is “a wonderful young man,” said Dr. David T. Robin, MD, associate director of the Center for Digestive Diseases and chief of the division of gastroenterology, hepatology, and nutrition at UChicago Medicine.

Dr. Rubin said Crohn’s disease is diagnosed more often in young adults, and about 10 percent of patients have inflammation of the liver and bile ducts. It is not known if one causes the other, he said, and treating one does not guarantee the other will go away.

He said the medical field has made “amazing progress” in treating Crohn’s disease, so patients should expect to be in remission. “They should be able to do anything and everything they want in their life.”

Dr. Rubin also credited paramedic Jacqueline Lopez, who went “to great lengths” to assist Rubenberg in his quest to climb the Pacific Crest Trail. Lopez, Home Infusion Options, which worked with the Rubinberg family to ship his medications and hire traveling nurses who provide intravenous infusions at “trail of angels” homes, Lopez found people loaning their homes to help hikers along the way.

Dr. Gautham Reddy, an expert in hepatology at UChicago Medicine, is overseeing the clinical trial, which will end in October. Reddy said Rubenberg plans to enroll in an optional supplement for an “open-label” study, where he will take the drug.

“At the beginning of the trial, he was not feeling well. He was exhausted and exhausted. He felt gloomy,” Reddy said. “Now, his general dispositions are much brighter. He seems to be a much happier and energetic young man.”

“I am very happy to hear that he is very effective and able to do the things he wants to do,” Reddy added. However, he cautioned against making assumptions about the drug’s potential benefits until clinical trial data is available.

Hiking the Pacific Crest Trail has been Rubenberg’s dream since 2018, Rubenberg said, crediting his parents and medical team with managing the complex logistics.

In preparation, he climbed the 273-mile “Long Trail” in Vermont last September. This is where he earned the track title “Bard,” after he rewrote the lyrics of Bob Seger’s “Turn the Page” as a poem for that track, he explained.

To help fund his current hike, Rubenberg took a week off in July to work on a golf tournament in South Lake Tahoe, California.

Rubenberg, who has written blog entries, said the best part of the trip was meeting “cool people.”

“Wanderers are some of the nicest people you will ever meet. The most trustworthy, the most confident people,” he said. “With the Angels of the Trail and the trail community here, it’s one of the best communities of people you’ll ever meet.”

The hard part, he said, is that because he has to stop every four weeks, he also has to separate from the hikers he meets along the way.

“Being alone on this path is a total mental challenge,” he said, “because the only person that motivates you is yourself.” “It kind of redefined for me what my limit was. Physically and mentally, it pushed me to push my limits.”

There have also been major loopholes, such as having to have a medical evacuation, twice: once in May due to altitude sickness in Mount Whitney, California, and again in July, when he developed a 102-degree fever and was diagnosed with COVID-19. He spent a few days in isolation in a hotel in South Lake Tahoe, where his mother was able to send him groceries.

“Thank God for modern technology,” Amy Rubenberg said.

Amy Rubenberg said nausea and throat problems last week forced him to drive 10 miles to Snoqualmie Pass, Washington, where he had to be taken to the nearest medical center for blood work ordered by his doctor. She said he’s taking an antibiotic because, she says, PSC can lead to an infection in the liver that can, in turn, have serious consequences.

Rubenberg also has a tendency to miss things, like a satellite messenger, a device for communicating with the world off course. He said with a laugh that he thought he dropped it in a park after a machine gun exploded unexpectedly. That wasn’t funny to his parents, who scrambled to buy him a new one and ship it to his next infusion destination while enduring the stress of not knowing where he was for a few days.

Amy Rubenberg said she worries about her son constantly, but she and her husband are proud of him and his determination.

“With all these trials and tribulations, there are a lot of things that could have made someone else give up and give up. But he just kept persevering and going on,” his mother said.

His father, Robert Rubenberg, agreed. “Even before he was diagnosed, it definitely seemed like a big dream[hiking the Pacific Crest Trail],” he said. “He is very driven. He has wanted to do this for a long time, and he has been able to push himself.”

Rubenberg worked at REI in Northbrook for about five months before setting out on a hiking trip in March. He said he hopes to work there again and possibly advance to become one of the company’s outdoor mentors.

Everyone, regardless of their physical condition or ability, is encouraged to take long walks.

“Going any distance, on any track, in my mind is impressive,” he said. “It doesn’t matter if you do everything or not. Just get yourself out there and enjoy nature – it’s amazing what it can do for you.”

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