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Genetic and Rare Diseases Information Center (GARD)

Other Names for this Disease
  • Coarse, dry, lusterless hair which breaks off easily
  • Twisted hair
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Your Question

Are there new therapies for treatment of pili torti?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is pili torti?

Pili torti is a rare hair condition characterized by fragile hair. In pili torti hair has a flattened shaft with clusters of narrow twists at irregular intervals.[1] Some cases are genetic while others are acquired. In the inherited form, symptoms tend to be present from early childhood. It can occur alone or in association with ectodermal dysplasias, Menke disease, Bjornstand syndrome, or Bazex syndrome. Acquired cases of pili torti may be associated with anorexia nervosa, malnutrition, oral retinoid treatment, or inflammatory scalp conditions (e.g., cutaneous lupus erythematousus).[1] Click here to visit DermAtlas and view an image of a child with pili torti.
Last updated: 2/23/2011

Are there new therapies for treatment of pili torti?

In acquired pili torti, treatment involves stopping the exposure to the causative agent (e.g., to oral retinoids) or condition (e.g., improving diet).[1] Currently we are not aware of new therapies for treatment for genetic cases of pili torti, however hair may become less fragile with age. It is generally recommended that people with pili torti try to avoid trauma to the hair.[1][2] Suggestions include, sleeping on a satin pillowcase, avoiding excessive grooming, braiding, heat treatments, dying and coloring, reducing exposure to sunlight (wear a hat), using gentle shampoos diluted in warm water, adding conditioner to freshly washed hair, avoiding use of a hair dryer (or using it on cool setting), and avoiding oral retinoids (e.g., isotretinoin, acitretin) if possible.[2][1] Some individuals with pili torti choose to wear a wig.[1]
Last updated: 2/24/2011