Patient Power

No one has the time or will to solve the mystery for you, especially when you have “non-life threatening” chronic issues that can have many different causes.

Doctors are very well suited to treat common illnesses and save your life in acute situations, but sometimes, you can’t beat the patient’s or their loved ones’, usually parents, drive to figure out what is really going on. These could be cases where the illness is rare, or even if it fairly common, still not fully understood.

Recently came across the story of Doug Lindsay, who despite being bedridden for 22 hours a day for 11 years, found a cure for himself, first through old textbooks then reaching out to researchers and a surgeon with his findings.

Also revisited the movie Lorenzo’s Oil, based on the true story of Lorenzo’s parents’ race against time to find a cure for their boy, and learned of this interesting tidbit.

At the time the movie was released, scientific studies had demonstrated that Lorenzo’s Oil did not work for other ALD patients who, like Lorenzo, had already developed symptoms of the disease. Lorenzo’s reaction to the Oil was an anomaly. (We are not aware of any explanation for why the Oil worked with Lorenzo.) The worries of the scientists and ALD Foundation leaders about holding out false hope to families (concerns that were ridiculed in the movie) turned out to be entirely justified. Then, in a twist of fate, scientific studies completed ten years after the film was made found Lorenzo’s Oil to be effective in preventing ALD in a different group of people, boys with the ALD genetic defect who did not yet have neurological symptoms. Ironically, these studies were performed by Dr. Hugo Moser. In the movie, the character modeled on Dr. Moser, Dr. Nikolais, is portrayed as the epitome of the unresponsive medical establishment.

The study mentioned above (Moser HW et al., Follow-up of 89 asymptomatic patients with adrenoleukodystrophy treated with Lorenzo’s oil) showed an approximately 2-fold reduction in the risk of developing MRI abnormalities.