Alopecia universalis

Title

Other Names:

Alopecia areata universalis; AU

Categories:

Immune System Diseases

Summary Summary

Alopecia universalis (AU) is a condition characterized by the complete loss of hair on the scalp and body. It is an advanced form of alopecia areata, a condition that causes round patches of hair loss.^[1] Although the exact cause of AU is unknown, it is thought to be an autoimmune condition in which an affected person's immune system mistakenly attacks the hair follicles.^[2] Roughly 20% of affected people have a family member with alopecia, suggesting that genetic factors may contribute to the development of AU.^[3] There is currently no cure for AU, but sometimes hair regrowth occurs on it's own, even after many years.^[2]^[4]

Last updated: 11/23/2014

Symptoms Symptoms

Alopecia universalis (AU) is characterized by the complete loss of hair on both the scalp and body. Most people with AU do not have other signs and symptoms, but some may experience a burning sensation or itching on affected areas. In some cases, AU can be associated with other conditions such as atopic dermatitis, thyroid disorders, and/or nail changes (such as pitting).^[5] Anxiety, personality disorders, depression, and paranoid disorders are more common in people with different forms of alopecia areata.^[1]

Last updated: 11/22/2014

The Human Phenotype Ontology (HPO) provides the following list of features that have been reported in people with this condition. Much of the information in the HPO comes from Orphanet, a European rare disease database. If available, the list includes a rough estimate of how common a feature is (its frequency). Frequencies are based on a specific study and may not be representative of all studies. You can use the MedlinePlus Medical Dictionary for definitions of the terms below.

Signs and Symptoms	Approximate number of patients (when available)
Alopecia areata	-
Alopecia totalis	-
Autoimmunity	-
Multifactorial inheritance	-
Nail pits	-

Last updated: 9/1/2016

Cause Cause

The exact underlying cause of alopecia universalis (AU) is not currently known. AU is an advanced form of alopecia areata (AA), a condition that leads to round patches of hair loss. AA is thought to be an autoimmune condition in which an affected person's immune system mistakenly attacks the hair follicles. Genetic studies have found that AA and AU are associated with several immune-related genes; however, they are likely complex disorders caused by the interaction of multiple genetic and environmental factors.^[6] This means that even if someone inherits a genetic predisposition to the condition, they may not become affected unless something in the environment triggers the onset of the condition.

Last updated: 11/23/2014

Inheritance Inheritance

Alopecia universalis is believed to be a multifactorial condition, which means it is caused by a combination of environmental influences and genetic predisposition.^[2] While a predisposition can be inherited and some affected people have a family history, the condition itself is not thought to be inherited.

Last updated: 11/23/2014

Diagnosis Diagnosis

A diagnosis of alopecia universalis is usually based on the signs and symptoms present in each person. In rare cases, a scalp biopsy may be needed to confirm the diagnosis.^[1]

Last updated: 11/23/2014

Treatment Treatment

Although these is no therapy approved for the treatment of alopecia universalis, some people find that medications approved for other purposes may help hair grow back, at least temporarily. Since alopecia universalis is one of the more severe types of alopecia areata, treatment options are somewhat limited. The most common treatments include corticosteriods and topical (applied to the skin) immunotherapy.^[2]

There are possible side effects of corticosteriods which should be discussed with a physician. Also, regrown hair is likely to fall out when the corticosteriods are stopped. About 40% of people treated with topical immunotherapy will regrow scalp hair after about six months of treatment. Those who do successfully regrow scalp hair need to continue the treatment to maintain the hair regrowth.^[7]

While these treatments may promote hair growth, they do not prevent new loss or cure the underlying disease.^[2] For those who do not respond to treatment, wigs are an option.^[7]

Last updated: 11/23/2014

Prognosis Prognosis

The course of alopecia universalis is highly unpredictable, and this uncertainty is one of the most difficult and frustrating aspects of the disease. Affected people may continue to lose hair, or hair loss may stop. Hair that has already been lost may or may not grow back.^[2]

Last updated: 4/6/2016

Do you have updated information on this condition? Let us know.

Research Research

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

ClinicalTrials.gov lists trials that are studying or have studied Alopecia universalis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

Patient Registry

Alopecia Areata Registry
MD Anderson Department of Dermatology
1400 Pressler Street – Unit 1452
Houston, Texas 77030
Toll-free: 1-866-837-1050
Fax: 713-794-1491
E-mail: alopeciaregistry@mdanderson.org
Web site: http://www.mdanderson.org/departments/alopecia/
Study coordinator: Joyce S. Osei, MPH, MHA
E-mail: jsosei@mdanderson.org

Organizations Organizations

Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

American Autoimmune Related Diseases Association (AARDA)
22100 Gratiot Avenue Eastpointe
East Detroit, MI 48201-2227
Toll-free: 800-598-4668
Telephone: 586-776-3900
Fax: 586-776-3903
E-mail: aarda@aarda.org
Website: http://www.aarda.org/
American Hair Loss Association
23679 Calabasas Road # 682
Calabasas, CA 91301-1502
E-mail: inquire@americanhairloss.org
Website: http://americanhairloss.org
National Alopecia Areata Foundation (NAAF)
65 Mitchell Boulevard
Suite 200-B
San Rafael, CA 94903
Telephone: 415-472-3780
Fax: 415-472-5343
E-mail: info@naaf.org
Website: http://www.naaf.org

Social Networking Websites

Alopecia World is a social networking site that offers support, resources, and information for people living with hair loss.

Do you know of an organization? Send us your suggestions.

Learn More Learn More

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

DermNet NZ is an online resource about skin diseases developed by the New Zealand Dermatological Society Incorporated. DermNet NZ provides information about this condition.
MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases. Click on the link to view information on this topic.
The National Organization for Rare Disorders (NORD) has a report for patients and families about this condition. NORD is a patient advocacy organization for individuals with rare diseases and the organizations that serve them.

In-Depth Information

Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
Online Mendelian Inheritance in Man (OMIM) is a catalog of human genes and genetic disorders. Each entry has a summary of related medical articles. It is meant for health care professionals and researchers. OMIM is maintained by Johns Hopkins University School of Medicine.
PubMed is a searchable database of medical literature and lists journal articles that discuss Alopecia universalis. Click on the link to view a sample search on this topic.

Resources for Kids

The American Hair Loss Association Web site lists resources for kids with alopecia. Click on American Hair Loss Association to view the page.

Related Diseases Related Diseases

The following diseases are related to Alopecia universalis. If you have a question about any of these diseases, you can contact GARD.

Alopecia areata

GARD Answers GARD Answers

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

What is the cause of my condition? And how many people get this? Can it be causing other side effects? See answer
Is this form of alopecia be reversible? Can the hair just grow back one day? See answer
My fiance has alopecia universalis. He has no family history of this condition. Recently, I read that the disease is hereditary. This worries me. Please help me understand our future children's chance of developing alopecia universalis. See answer
Is there a cure for alopecia universalis? See answer
I was born with alopecia universalis. I have recently had regrowth of thin sparse hairs. What can I expect from this condition? Will my hair ever grow back fully and can the condition be cured? See answer

Have a question? Contact a GARD Information Specialist.

References References

Chantal Bolduc. Alopecia Areata. Medscape Reference. March 19, 2014; http://emedicine.medscape.com/article/1069931-overview. Accessed 8/26/2014.
Alopecia Areata: Questions and Answers About Alopecia Areata. National Institutes of Arthritis and Musculoskeletal and Skin Disorders (NIAMS). April 2015; http://www.niams.nih.gov/Health_Info/Alopecia_Areata/.
Alopecia areata. MedlinePlus. 11/20/2012; http://www.nlm.nih.gov/medlineplus/ency/article/001450.htm.
Types of Alopecia Areata. National Alopecia Areata Foundation. 2011; http://www.naaf.org/site/PageServer?pagename=about_alopecia_types. Accessed 7/11/2014.
Cho HH, Jo SJ, Paik SH, Jeon HC, Kim KH, Eun HC, Kwon OS. Clinical characteristics and prognostic factors in early-onset alopecia totalis and alopecia universalis. J Korean Med Sci. July, 2012; 27(7):799-802. Accessed 8/26/2014.
Lee S., et. al. Exomic sequencing of immune-related genes reveals novel candidate variants associated with alopecia universalis. PLoS One. 2013; 8(1):Accessed 8/26/2014.
Treatment for Alopecia Areata. National Alopecia Areata Foundation. 2011; http://www.naaf.org/site/PageServer?pagename=about_alopecia_treatment. Accessed 5/8/2012.
Nucara S, Colao E, Mangone G, Baudi F, Fabiani F, Nocera D, Passafaro G, Longo T, Laria AE, Malatesta P, Amato R, Trapasso F, Perrotti N. Identification of a new mutation in the gene coding for hairless protein responsible for alopecia universalis: The importance of direct gene sequencing. Dermatology Online Journal. 2011; 17:3. http://www.ncbi.nlm.nih.gov/pubmed/21272494. Accessed 3/2/2012.