Glen Sauber successfully overcame testicular cancer and was symptom-free– until three years later when he began to experience neurological symptoms.
According to a recent article in the San Francisco Chronicle, doctors could not explain his loss of balance, double vision, slurred speech, and his inability to control the movement of his arms and legs.
The doctors tested Glen for Parkinson’s disease. Glen thought it was multiple sclerosis. But a scan indicated an inoperable brain tumor.
Finally an Accurate Diagnosis
Glen was expecting the unavoidable brain operation when a doctor at UCSF Medical Center, who was conducting a study of a new method of diagnosing autoimmune disorders, suggested that Glen become a participant.
Within a year, the UCSF team discovered that the same cancer-killing proteins that went on the attack against his testicular cancer were now attacking his brain. In effect, Glen’s nerve cells were being destroyed by his immune system.
The team explained that Glen’s body had developed antibodies that attacked his primary cancer. Those antibodies are now attacking his brain. Asof yet no treatments are available.
Glen, now 41 years old, is coping with his new diagnosis and feels that it “could have been much worse”.
About Kelch-like Protein 11
Glen is the first person to receive the diagnosis which has not yet been given a formal name. For now, it is called kelch-like protein 11. Glen’s case appeared in the prestigious New England Journal of Medicine.
As of July 2019, forty to fifty new cases have been reported. Scientists estimate that the new diagnostic tool could be used to diagnose thousands of men who have autoimmune disorders that were activated by cancer.
About the Mayo Clinics Screening Process
Mayo Clinic operates a program for the study of autoimmune disorders affecting the central nervous system and the brain. Over 150,000 people are screened each year.
Antibodies are taken from the patient’s spinal fluid. The antibodies are applied to a fragment of tissue taken from the brain of mice. The tissue is stained so that the scientists are able to search for patterns showing where antibodies adhere to cells. With this procedure, the scientists can see what areas in the brain are being attacked by the immune system.
Looking Back Twenty Years
About twenty years ago a testicular cancer patient at the Mayo Clinic began to experience problems walking as well as with his vision and speech.
His spinal fluid was analyzed and the scientists detected an unusual pattern that resembled “sparkles”.
Within a few years, the scientists saw other men who had the same neurological symptoms, had testicular cancer and exhibited the same sparkle pattern. However, they were unable to tell if the cancer was in any way associated with the neurological symptoms.
The Chan Zuckerberg Biohub and Discovery of a New Disease
Two scientists working at the Mark Zuckerberg and Priscilla Chan’s non-profit research center were conducting studies of meningitis and encephalitis (inflammation of the spinal cord and brain).
At some point, they realized that over half the diseases they encountered were not caused by infections but were actually autoimmune disorders. However, they did not have a method of diagnosing these disorders.
The two scientists turned to their new screening tool and used it for the autoimmune cases. Glen was the first case to be analyzed.
The tool takes an antibody and runs it through several hundred thousand human proteins. The scientists said it was a “eureka moment” when they discovered that the antibodies taken from Glen’s spinal fluid showed the kelch-like protein 11.
The sample was immediately sent to the Mayo Clinic for testing. The mouse tissue tests at the Mayo Clinic turned up “sparkles”. The scientists had identified the new disease.
Only Half-way There
Scientists know that kelch-like protein 11 can be found in various brain cells and in testicular tumors but that is where the trail ends.
It has been established that proteins turn genes on and off and control cellular function. The next step is to determine what role the kelch-like protein 11 plays in cellular function.
On a positive note, the protein draws antibodies that signal the body’s immune system to trigger an attack. This is beneficial with respect to testicular tumors and triggers an aggressive response by the body’s immune system.
The downside, however, is that the antibodies continue to search for the protein and then attack the brain.
The next major step is to engineer a treatment to turn off the autoimmune response after it has lost its usefulness.
For the time being, Glen is being treated with drugs that suppress the immune system. He still requires a walker and had to resign from his job but he is grateful that his condition has been stabilized.