Fourteen years ago, Tommy Morehead was a college student planning to join the Marines when passing the enlistment eye exam proved difficult. Expecting to simply visit an optometrist and get a new eye glass prescription, he was shocked to learn that he could be completely blind in less than a year.
His eyesight’s decline was sudden. Soon, his vision was so poor that he had to give up driving, leave college, stop playing the saxophone, and hold onto his dad’s shirt to navigate public spaces. His diagnosis: Leber’s hereditary optic neuropathy (LHON), an extremely rare genetic eye disease. The prevalence of LHON is only one in 50,000 people. In the United States, this translates to only 100 new patients diagnosed each year. A referral led him to the leading investigator of this rare disease, Alfredo Sadun, M.D., Ph.D., at Doheny.
As a mitochondrial genetic defect, LHON is only passed through the mother. It usually does not cause blindness until the patient reaches young adulthood. Men are typically affected at about the age of 20. Blindness appears first in one eye and then, after a delay—sometimes as short as several weeks—sight fails in the remaining eye. At present, there is no known cure for LHON; there are only treatments to mitigate the vision loss.
Through working with Dr. Sadun, Morehead was admitted to a trial for a new medication and, in fact, he was the first person on the planet to receive the drug. At first, the assumption was the therapy would cause an immediate response, but instead it took a longer course. At 18 months, the deterioration ended and slowly his vision started to improve. Today, his vision has been almost fully restored. In the decade since the trial, he has completed his college degree, landed his dream job in IT, once again plays in a jazz band, and gained full independence to live on his own.
Tommy Morehead still takes the medication and regularly sees Dr. Sadun. He is most fortunate. By making his way to Doheny, both his vision and his life were restored.