Keywords

Cicatricial Alopecia, Scarring Alopecia, Alopecia, Scalp Disorder, Hair Loss, Dermatology Nurses

 

Authors

  1. Belkin, Sheila

Abstract

ABSTRACT: Cicatricial (scarring) alopecia refers to a group of rare disorders that destroy the hair follicle and replace it with scar tissue, thereby causing permanent hair loss. It occurs worldwide in otherwise healthy men and women of all ages. This article chronicles the grassroots effort that resulted in forming the Cicatricial Alopecia Research Foundation (CARF), which became a nonprofit organization in 2005. CARF's mission is to promote research, to find better treatments and a cure for cicatricial alopecia, to support education and advocacy, and to raise public awareness. This article includes profiles of individuals with different forms of cicatricial alopecia and describes specific ways dermatology nurses can take advantage of CARF's resources as they care for patients with cicatricial alopecia and their families.

 

Article Content

Cicatricial (scarring) alopecia refers to a group of rare disorders that destroy the hair follicle and replace it with scar tissue, thereby causing permanent hair loss. It occurs worldwide in otherwise healthy men and women of all ages.

 

My personal journey with cicatricial alopecia began more than 10 years ago. After seeing several doctors who could not give me a clear diagnosis, I saw Dr. Vera Price, who confirmed my diagnosis of lichen planopilaris (Figure 1) and gave me the worst-case scenario: I would lose more hair and it would not grow back. I wept while Dr. Price comforted me. She told me I could get a partial hairpiece and no one would ever know. As someone who was born with a thick mop of Shirley Temple hair, for which I had received compliments throughout my life, the prospect of wearing a hairpiece was shocking. I could not imagine how I would ever again feel anything other than naked and vulnerable. Little did I know then that the doctor-patient relationship that began in that examination room would blossom into a friendship that would benefit cicatricial alopecia patients around the world.

  
Figure 1 - Click to enlarge in new windowFIGURE 1. Lichen planopilaris. Diffuse distribution of hair loss. The absence of follicular markings is notable.

Several months later, Dr. Price accepted my invitation to attend a brunch for friends who wanted to learn about my hair loss. The strong show of support at this informal gathering was the springboard for our grassroots effort that resulted in forming the Cicatricial Alopecia Research Foundation (CARF), which became a nonprofit organization in 2004. Our cause was to promote research, to find better treatments and a cure for cicatricial alopecia, to support education and advocacy, and to raise public awareness.

 

For me, it was my work with CARF that helped me more than anything else because I believe there is no better way to heal oneself than by giving back and helping others. CARF has grown from a group of seven patients to include more than 1,000 patients who have received information through our patient support and educational work-newsletters, support groups, conferences, and Web site. In addition, CARF-funded research is leading the effort to find more effective treatments and a cure for cicatricial alopecia (Sidebar 1).

 

With all the strides CARF has made in the last 5 years, there still is an urgent need for greater patient education and support, and that is where dermatology nurses can play a unique role. What we want dermatology nurses to do is to learn about the cicatricial alopecias so they can treat and counsel patients with knowledge and correct facts. CARF's Web site, http://www.carfintl.org, is a good place to start. The companion article "Cicatricial Alopecia," by Drs. Jenny M. Fu and Vera H. Price in this issue, provides an overview of the diagnosis and treatment of cicatricial alopecia (Journal of the Dermatology Nurses' Association, Volume 2, Issue No. 3). Treatment regimens are also available from CARF.

  
Sidebar 1 - Click to enlarge in new windowSIDEBAR 1. Highlights of CARF's Accomplishments

Dermatology nurses need to be aware that for most patients, it is devastating to be diagnosed with a disease that is not only painful, with severe burning and itching, but causes permanent hair loss. Our hair is an important part of our self-image. Cosmetic resources exist, many of which are listed in the appendix, "Cosmetic Options for Covering Hair Loss," which is also available on the CARF Web site. CARF encourages dermatology nurses to copy this and other CARF resources to share with patients. The list of cosmetic options was drawn from patients who have shared information at CARF Patient Doctor Conferences about cosmetic items they found helpful in their daily lives. If dermatology nurses hear of products or practices that have been helpful to their patients, please send, or encourage your patients to send, suggestions to Margaret@carintl.org.

 

CALL TO ACTION FOR DERMATOLOGY NURSES

Dermatology nurses can have a direct and profound impact on the lives of cicatricial alopecia patients by

 

* realizing that cicatricial alopecia is a medical emergency in the sense that the disease must be treated and arrested as soon as possible because it involves permanent hair loss,

 

* performing a biopsy (or recommending that one be performed) to verify the diagnosis,

 

* treating those who have signs of active disease and inflammation to prevent further hair loss,

 

* being knowledgeable about treatment approaches to the lymphocytic and neutrophilic disorders,

 

* validating patients' concerns and feelings,

 

* helping patients understand the disease and giving them CARF brochures, "What You Should Know about Cicatricial Alopecia" and "Central Centrifugal Cicatricial Alopecia," and

 

* referring them to CARF's Web site, where they can get up-to-date information on research, frequently asked questions about cicatricial alopecia, and upcoming patient support events (Sidebar 2), as well as links to tips on choosing and caring for hairpieces and other practical information.

 

 

Dermatology nurses can give patients hope by letting them know that dedicated doctors and researchers, with CARF's support, are engaged in research to develop new treatments and to find a cure. The dermatology nurse can play a meaningful part in patients' and families' education, acceptance, and recovery. CARF invites dermatology nurses to become partners in helping patients receive better quality medical and nursing care as they go through the stages of diagnosis and treatment and move toward their own individual ways of living and coping with their disease (Sidebars 3 and 4).

  
Sidebar 2 - Click to enlarge in new windowSIDEBAR 2. Cicatricial Alopecia Conferences
 
Sidebar 3 - Click to enlarge in new windowSIDEBAR 3. Patient Profile: Annette Moore
 
Sidebar 4 - Click to enlarge in new windowSIDEBAR 4. Patient Profile: Margaret Sachs
 
Figure 2 - Click to enlarge in new windowFIGURE 2. Central centrifugal alopecia. The hair loss in this patient is central and symmetric. There are very few signs of inflammation.
 
TABLE. No caption av... - Click to enlarge in new windowTABLE. No caption available.

Appendix: Cosmetic Options for Covering Hair Loss