Alopecia: the Patient’s Viewpoint

Updated 3/2017 -- all links (except to my own posts) removed as many no longer active. 

The New York Times has a series called Patient Voices which gives insights from the patients with the disease, physical and emotional changes in their lives, and accommodations made.  The most recent series is on patients with alopecia or hair loss.

The Voices of Alopecia by Tara Parker-Pope (July 6, 2010)

This week, Patient Voices explores alopecia, an autoimmune disease that leads to a few bald patches to the loss of every hair on a person’s body.

To hear what it’s like to live with alopecia, listen to the Patient Voices audio slide show that features adults, children and their parents who are coping with the condition.

Patient Voices: Alopecia  Listen to these seven people tell what it is like to live with alopecia?

Matt Kelly, 43, lost his hair at age 38 over a 6 week time span.

Jennifer DeFreece, 29, developed alopecia totalis as a child.

Margaret Staib, 42, an artist with three daughters.

Rafi Wasselman, 16, says his best medicine is his collection of caps.

Maureen McGettigan, 47, began losing her hair at age 16.

Annie Kazmi, 33, tells her daughter Noori’s story.  Then Noori tells her own.

A ‘Forest Fire of Hair Loss,’ and Its Scars written by Karen Barrow tells Matt Kelley’s story.

……….Mr. Kelley, now 43, has alopecia areata, an autoimmune disease that causes the body to attack its own hair follicles. Alopecia, which does not include normal male-pattern baldness, affects nearly 2 percent of the global population and has no universally effective treatment. Its progression is unpredictable and can range from a few bald patches to a completely hairless scalp to the loss of every hair on a person’s body — known as alopecia universalis. Sometimes the hair regrows, sometimes it does not, and sometimes it grows in only to fall out again years later.

The associated “Ask an Expert About Alopecia” gives NYT’s readers the opportunity to have their questions regarding alopecia answered by Dr. Maria Hordinsky, chair of the dermatology department at the University of Minnesota.