What is Uncombable Hair Syndrome?

If you have ever run a brush through your hair, only to find it seems unrulier than when you started, you may be surprised to know that you might actually have a rare hair condition. It’s not hair loss as such, but it’s related: it’s been christened Struwwelpeter Syndrome, and it is all down to genetics.

Scientists in Bonn and Toulouse have recently been working with fellow researchers from around the world to ascertain why some hair is literally uncombable (the syndrome has also been nicknamed Uncombable Hair Syndrome). Affected hair is typically very frizzy, dry, light blonde and very shiny. And, say the scientists, it resists every attempt to comb it.

They say that symptoms are usually more pronounced in childhood, with adult hair much less likely to be affected.

Cases not picked up

The first recorded case goes back to 1973, and while more than 100 cases have been reported since, it is thought that thousands more people are affected but their cases haven’t been picked up by the medical community not surprising since it is hardly the kind of condition that people would seek help for.

Professor Regina Betz from Bonn University’s Institute for Human Genetics, however, found herself fascinated by the condition. As an expert in rare hereditary hair disorders, she started looking into the causes, spurred on by a British colleague with two ultra-frizzy-haired children.

According to the Bonn University website, Betz found nine other children around the world who were affected by the condition and their genes were analysed. Researchers came across mutations in three genes that are involved in the formation of hair.

In a nutshell, the function of hair-building proteins was affected by those with even one of the mutated genes. Scientists went on to prove this with mice, in which they were able to see fur anomalies when one of the three genes was mutated.

“From the mutations found, a huge amount can be learned about the mechanisms involved in forming healthy hair, and why disorders sometimes occur,” says Professor Betz. “At the same time, we can now secure the clinical diagnosis of ‘uncombable hair’ with molecular genetic methods.”

Science racing ahead

For obvious reasons, people with a hair loss condition are far more likely to seek out expert help than someone with uncombable hair and, because of this, science is racing ahead with new treatments and possible future cures.

At present, multiple conditions including Male and Female Pattern Hair Loss can be effectively treated. Hair thinning caused by genetics can be dealt with by a specialist through the tailoring of a customised hair loss treatment programme featuring clinically-proven treatments, and boosters where appropriate.

While many men and women attest to the efficacy of this approach, more options are perhaps long overdue for the hair loss conditions that cannot currently be treated.

This is especially true in the field of Alopecia Universalis, a rare but extreme form of the autoimmune disorder Alopecia Areata. People with Alopecia Universalis lose all of the hair on their head, face and body, and at present treatment options are not very effective.

However, medical teams in the US in particular are currently experimenting with a range of new possibilities, some of which have proven effective on treating the condition in small-scale tests. These are chiefly based around existing drugs known as JAK inhibitors which were originally developed to treat certain bone cancers and other conditions. Whilst the clinical trials to date have shown impressive results, these are early round, small scale studies so there is a way to go yet. Getting a new product to market is seldom easy, however, and it could be several years before any new treatments are approved.