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An experimental treatment for a rare genetic disease led to an unexpected change in the patient’s hair color. A strange discovery for a real medical advance.
In 2019, Jordan Gans is the first patient to receive an experimental treatment for cysteine disease, which is characterized by a deficiency in the transport of the amino acid (cysteine) – and thus its accumulation – which can have an effect on many organs, particularly the kidneys, liver or eyes. This young Canadian, aged 20 at the time, knew he had only a few years left to live, as the life expectancy of a patient with cystine disease rarely exceeds 28 years.
A stressful treatment with surprising consequences
Until then, no treatment had been able to cure cystinosis. So this emerged as a great medical advance, but it wasn’t without consequences.
Doctors had to extract stem cells from the patient’s bone marrow to modify them in the laboratory. At the same time, Jordan Gans was undergoing chemotherapy. The purpose of this treatment? Elimination of malignant cells from the patient’s body, especially from the bone marrow, before it receives genetically modified cells with anti-cysteine proteins.
Evidence for the efficacy of gene therapy
Thus, the treatment led to the formation of very painful ulcers in the patient’s mouth, as well as to hair loss. Her hair, originally blond (even white), has completely fallen out. Then it grew again, but in a completely different color: black.
according to Atlantic Ocean, Regrowing Jordan Gans’ hair to another degree would mean the gene therapy was working. The anti-cysteine proteins from his modified cells must have reached the hair follicles of his skin. There, they removed the excess cysteine that (among other things) prevented the normal production of melanin, and her hair became darker.
According to the researchers, this discovery is a beacon of hope for all cystine disease patients, who can see their life expectancy increase dramatically thanks to gene therapy.