“Imagine taking a hot knife and running it up and down your bones,” said Formula 4 racing champion Angela Durazo, “while you have food poisoning.”
That’s how rheumatoid arthritis (RA) feels, Durazo told the audience at the fifth Sanford Burnham Prebys (SBP) Insights symposium, held June 20 at the institute’s La Jolla campus.
The quarterly series, which explores the latest approaches to common yet baffling diseases, begins with 20-minute talks by a patient, a doctor and an Sanford Burnham Prebys scientist, who then sit down together to field audience questions. Durazo was joined by UC San Diego chief of allergy, immunology and rheumatology Hal Hoffman, and director of Sanford Burnham Prebys’ Infectious and Inflammatory Diseases Center Carl Ware.
“The idea is to cross-pollinate with the community,” explained Zaher Nahle, CEO of the Arthritis National Research Foundation, who moderated the session on autoimmune disease, “because these patients, doctors and scientists also benefit from hearing questions from the audience.”
Autoimmune disease is any disorder that crosses the immune system’s signals and causes it to attack the body’s own parts instead of invaders. In addition to RA, it includes diabetes, multiple sclerosis and lupus.
During his talk, Ware described a new compound — a BTLA agonist discovered in his lab that is now in Phase 1 trials — that shows “great promise” for people suffering from lupus and, perhaps, RA. But, he said, much more than that is on the horizon.
“We’re just at the position where we have a Model T,” Ware said, “and 10, 20, 30 years from now, we’ll be able to test your DNA, which might indicate a mutation that might cause an autoimmune disease.”
The current frontline in the war on autoimmune diseases are NF-kB inhibitors, which Ware described as “very effective in a subset of patients.” Unfortunately, he said, half-to-two-thirds of patients don’t respond, “and we have no idea why that is.”
Durazo is one of those unresponsive patients. A professional triathlete at the height of her career, she was suddenly forced to retire because RA knocked her out.
“I went from being a star athlete to not being able to open a water bottle,” she said. “I couldn’t ride a bike anymore, I couldn’t run. I lost everything that I was.” Durazo said she went through “a year of alcoholism, depression and being lost” before being introduced to radical new RA treatment options and auto racing, which she said gave her “a new lease on life.”
Her treatments include seven-week cycles of the androgen steroid hormone DHEA, twice-weekly glutathione injections and Pentadecapeptide BPC 157, which Durazo described as “an oxidizing molecule that works on a telomere level to reconstruct the cell.”
Not only did Durazo field the majority of audience questions — one family said they traveled all the way from Los Angeles just to hear her speak — she did so with medical knowledge in the ballpark of her co-panelists. (“Ever since I was a kid, I loved to read medical textbooks,” Durazo explained.)
La Jolla resident Sharon Wampler, who worked in the biotech/pharma industry before becoming a patient herself — she suffers from Lyme disease — asked Durazo how difficult it was finding physicians to partner with her.
Durazo replied that she had to stress, very aggressively, that “this is the treatment I’m going to pursue no matter what.” She added: “One thing I’ve found with all doctors — except for Dr. Hal, of course — is ego. But pushing for what’s going to be best for you is an opportunity for growth, for both the patient and the doctor.”
Durazo said that one doctor told her she’d be crippled by her 10th year of battling RA.
“It’s been eight years so far, and here I am,” Durazo said. “At the end of the day, our disease does not define us. You can define it.”
— The next Sanford Burnham Prebys Insights event, on pancreatic cancer, takes place 5:30 p.m. Thursday, Nov. 21 in the Institute’s Auditorium, Building 12, 10905 Road to the Cure. Admission is free. sbpdiscovery.org