Rare disease treatment changes hair color


  • Melanin is the molecule responsible for the color shades of our hair, our skin, but also our eyes.
  • Cystinosis is rare but its incidence is 10 times higher among French Canadians than anywhere else in the world, according to Genome Quebec.
  • Cystinosis is rare but its incidence is 10 times higher among French Canadians than anywhere else in the world, according to Genome Quebec.

From pale blond to almost brown: while undergoing experimental treatment for a rare genetic disease, a Canadian saw the color of his hair change drastically.

It all starts in October 2019, raconte The Atlantic. 20-year-old Jordan Janz becomes the first patient in the world to experience a new treatment for cystinosis, a fatal genetic disease that results in an excess of the amino acid cystine in the cells of certain organs, such as the liver , brain, eyes and a number of muscles. People suffering from this pathology have an average life expectancy of 28.5 years.

A cure that works

The treatment, difficult to bear, consists of extracting stem cells from the bone marrow, modifying them in the laboratory, then reinjecting them into the patient, after he has undergone chemotherapy to eliminate the harmful cells from his body. Consequence of the chemo, among others: the sudden fall of her pale blond hair.

Under the effect of the treatment, Jordan Janz regains color, and his hair grows back. Except that to his surprise, they changed color and are now “dark, almost black”, explains the American magazine. Today, after more than two years of almost brown hair, the color has evolved again, gradually turning to dark blond. According to researchers at the University of California, San Diego, this capillary darkening, “very surprising”would be proof that the treatment worked.

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Only in Caucasians

Jordan is not alone: ​​out of five individuals who have since undergone the same treatment, four have seen their hair darken (the fifth is now awaiting regrowth of his). All of them are Caucasian: according to The Atlantic, only people with white and particularly pale skin, who are more likely to be affected by cystinosis than others, are affected by this change in hair color. Would there be a link? A study carried out on mice showed that the gene responsible for this disease plays a role in the production of melanin, responsible for the coloring of the skin… and the hair.

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

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