Prevalence estimates on Rare Medical Network websites are calculated based on data available from numerous sources, including US and European government statistics, the NIH, Orphanet, and published epidemiologic studies. Rare disease population data is recognized to be highly variable, and based on a wide variety of source data and methodologies, so the prevalence data on this site should be assumed to be estimated and cannot be considered to be absolutely correct.
Age of Onset
Autosomal dominant ?A pathogenic variant in only one gene copy in each cell is sufficient to cause an autosomal dominant disease
Autosomal recessive ?Pathogenic variants in both copies of each gene of the chromosome are needed to cause an autosomal recessive disease and observe the mutant phenotype
X-linked dominant ?X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
X-linked recessive ?Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder
Mitochondrial or multigenic ?Mitochondrial genetic disorders can be caused by changes (mutations) in either the mitochondrial DNA or nuclear DNA that lead to dysfunction of the mitochondria and inadequate production of energy.
Multigenic or multifactor ?Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors.
Other Names (AKA)
Alopecia areata universalis; AU
Congenital and Genetic Diseases; Immune System Diseases; Skin Diseases
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. Although the exact cause of AU is unknown, it is thought to be an autoimmune condition in which the person's
This table lists symptoms that people with this disease may have. For most diseases, symptoms will vary from person to person. People with the same disease may not have all the symptoms listed. This information comes from a database called the Human Phenotype Ontology (HPO) . The HPO collects information on symptoms that have been described in medical resources. The HPO is updated regularly. Use the HPO ID to access more in-depth information about a symptom.
|Medical Terms||Other Names||
|80%-99% of people have these symptoms|
Failure of development of eyebrows
Failure of development of eyelashes
|Percent of people who have these symptoms is not available through HPO|
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While genetic studies have found that AA and AU are associated with several immune-related
- diphenylcyclopropenone (DPCP)
- squaric acid dibutylester (SADBE)
- photodynamic therapy
- cyclosporine in combination with methylprednisolone (a steroid)
There are several recent studies showing that a class of medication known as JAK inhibitors, which includes Tofacitinib and Ruxolitinib, are effective in alopecia areata, including AU. However, JAK inhibitors have not yet been approved by the FDA for use in skin conditions.
In some people with AU, hair regrowth occurs without treatment, sometimes after many years.
There are steps that can be taken to decrease the chance of getting too much sun and minimize other discomforts related to having no hair. These may include:
- Using sunscreen on the scalp, face, and all areas of the skin exposed to the sun
- Wearing eyeglasses or sunglasses to protect the eyes from too much sun and from dust and debris when eyebrows or eyelashes are missing
- Wearing wigs, caps, or scarves to protect the scalp from the sun and keep the head warm
- Applying an ointment inside the nostrils to keep them moisturized and help to protect against organisms invading the nose when nostril hair is missing
Many other treatments have been reported to have variable response rates in small studies in alopecia areata. These include latanoprost, nitrogen mustard, massage and relaxation, isoprinosine, acupuncture, and aromatherapy, among others.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
American Autoimmune Related Diseases Association (AARDA)
19176 Hall Road, Suite 130
Clinton Township, MI 48038
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.
- 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.
- 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.
- Orphanet is a European reference portal for information on rare diseases and orphan drugs. Access to this database is free of charge.
- 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.
- The American Hair Loss Association Web site lists resources for kids with alopecia. Click on American Hair Loss Association to view the page.
- Bolduc C. Alopecia Areata. Medscape Reference. May 8, 2017; https://emedicine.medscape.com/article/1069931-overview.
- Questions and Answers about Alopecia Areata. NIAMS. May, 2016; https://www.niams.nih.gov/Health_Info/Alopecia_Areata/default.asp.
- Lee S., et. al. Exomic sequencing of immune-related genes reveals novel candidate variants associated with alopecia universalis. PLoS One. 2013; 8(1):
- 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. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390731/.
- Oakley A. Alopecia areata. DermNet NZ. December, 2015; https://www.dermnetnz.org/topics/alopecia-areata/.
- Kassira S, Korta DZ, W Chapman L, Dann F. Review of treatment for alopecia totalis and alopecia universalis. Int J Dermatol. April 5, 2017; [Epub ahead of print]:https://www.ncbi.nlm.nih.gov/pubmed/28378336.
- Frellick M. JAK Inhibitors Show Promise for Alopecia, Eczema, Vitiligo. American Academy of Dermatology (AAD) Annual Meeting. . Disponible en:. March 07, 2017; https://www.medscape.com/viewarticle/876855.
- Bolduc C. Alopecia Areata Treatment & Management. Medscape Reference. May 8, 2017; https://emedicine.medscape.com/article/1069931-treatment#d11.
- Treatments for Alopecia Areata. National Alopecia Areata Foundation. 2017; https://www.naaf.org/site/PageServer?pagename=about_alopecia_treatment.
- Prevalence and incidence of rare diseases: Bibliographic data. Orphanet Report Series. June, 2017; 1:7. https://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_alphabetical_list.pdf.
- Pratt CH, King, Jr. LE, Messenger AG, Christiano AM, Sundberg JP. Alopecia areata. Nat Rev Dis Primers. March 16, 2017; 3:https://www.nature.com/articles/nrdp201711.
- Nucara S, Colao E, Mangone G, et. al. Identification of a new mutation in the gene coding for hairless protein responsible for alopecia universalis: The importance of direct gene sequencing. Dermatology Online J. January 15, 2011; 17(1):3. https://www.ncbi.nlm.nih.gov/pubmed/21272494.