A new experimental cystinosis treatment has proven successful but has also had an unintended side effect. A report states that four-fifths of the five cystinosis patients have experienced a difference in hair color after treatment.
When someone has cystinosis, their body builds up an abnormal amount of cystine. Cysteine crystals are formed when this amino acid is present in the body. That buildup can affect many parts of the body. And, because it’s genetic, the disease is passed down through families. Oftentimes, patients with cystinosis vomit a lot, suffer from dehydration, and can even develop more serious problems, too.
This experimental cystinosis treatment has a weird side effect
Jordan Janz was 20 years old when he began an experimental cystinosis treatment. As a rare, genetic disease with no known cure at the time, finding a way to treat cystinosis was a top priority for doctors for decades. That’s because on average, people diagnosed with cystinosis only live to be around 28 and a half years old.
That’s not a very long life, especially when you consider that a disease like cystinosis isn’t something you have any control over picking up. Janz was given blood stem cells and genetically modified in the lab by doctors. At the same time, Janz had to undergo chemotherapy to destroy the rest of the faulty cells.
Janz told The Atlantic that the entire process of the cystinosis treatment was “physically grueling.” The chemo even got so bad, that Janz was unable to eat because he developed sores in his mouth that were extremely painful. Janz lost his pale, blonde hair as a result. Janz experienced hair loss as a side effect to chemotherapy.
Growing back darker
What was unusual though, was how his hair grew back after the cystinosis treatment was administered. See, a big part of the treatment required the doctors to genetically modify his stem cells. They modified them to express the gene that cystinosis mutates, a gene called CTNS. With the new cells, the white blood cells of his body began to pump out the protein and remove the cystine crystals.
After a time, his hair began to grow again. Though, as noted above, the cystinosis treatment caused it to grow back darker, almost black. Janz has a darkened blonde hair now, several years after the treatment. This is a big difference from his pale blonde hair.
But what causes these changes? Well, As it turns out, the cystinosis gene also plays a part in your body’s hair pigments. While not every patient diagnosed with cystinosis has different colored skin or hair, it has been noted in many individuals with the disease. Cystinosis therapy may have helped to clear the buildup.
Unfortunately, there’s still a lot we don’t know about the cystinosis gene. And this cystinosis treatment won’t reverse the damage that the disease has already done to patients’ bodies. But, it can stop the progression of the disease, especially in younger individuals.
This isn’t the first time we’ve seen genetic modification used to treat ailments. But, if it works, Stephanie Cherqui, a stem-cell scientist at UC San Diego and one of the scientists behind the trial of the cystinosis treatment, says that it could prevent future kids with the disease from having to live a life of suffering.
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