New Treatment for Cystinosis a Rare Disease Changes Hair Color in Light Skinned Patients

In the search for a cure for cystinosis a rare genetic disease, scientists may have inadvertently discovered how to genetically change hair color. Melanin is the molecule responsible for hair, skin, and eye color.

Dark Blond Hair

Cystinosis is rare, but its prevalence is 10 times higher among French Canadians than elsewhere in the world, according to Génome Québec. From light blond to almost brown: A Canadian undergoing experimental treatment for a rare genetic disease has seen his hair color change dramatically during treatment.

According to The Atlantic twenty-year-old Jordan Janz became the first patient in the world to experiment with a new treatment for cystinosis, a fatal genetic disease that results in an excess of cystine, an amino acid in the cells of certain organs such as the liver, brain, eyes and a variety of muscles. People with this disease have an average life expectancy of 28.5 years.

A cure that works

The treatment, which is difficult to administer, involves taking stem cells from bone marrow, modifying them in the laboratory, and then re-injecting them into the patient after they have undergone chemotherapy to remove the harmful cells from the body. One of the consequences of the chemotherapy was that he suddenly lost his blond hair.

After the treatment, Jordan Janz regrew his hair back. Only, to his surprise, it has changed color and is now dark, almost black. Now, after more than two years of almost brown hair, the color has changed again and has gradually become dark blonde. According to researchers at the University of California, San Diego, this very surprising darkening of the hair is proof that the treatment worked.

Only in light-skinned Caucasians

Jordan isn’t alone: of five people who underwent the same treatment, four saw their hair darken (the fifth is now waiting to grow his hair back). According to The Atlantic, only fair-skinned people, are more likely to be affected by cystinosis than others. Could there be a connection? A study in mice has shown that the gene responsible for the disease plays a role in the production of melanin, which is responsible for the color of the eyes, hair, and skin.

Blonde, brown, red, blue: it doesn’t matter what color your new hair is, the important thing is that the treatment for this previously incurable genetic disease seems to be working. And although Jordan Janz will soon have to undergo a kidney transplant because of the effects of cystinosis, he has paved the way for a treatment that promises to be revolutionary if the disease is detected early enough.