Uncombable hair syndrome: burdensome or captivating?

Uncombable hair syndrome (UHS) is a rare abnormality of the hair shaft where the affected person has dry, wiry and frizzy hair that cannot be combed straight. We have had contact with well over 100 individuals affected (or their parents) and found that UHS is not only a hair anomaly, but also a major stressor for many of these individuals, especially in terms of bullying and unwanted touching of their hair. However, some of those affected (or their parents) are also very proud of their special hair; thus, it was important for us to hear the voice of someone affected by UHS.