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Mycosis fungoides
- Other Names:
Alibert-Bazin syndrome; Granuloma fungoidesAlibert-Bazin syndrome; Granuloma fungoides
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Learn more about site improvements that will be live by Spring 2023.
We would like to hear your feedback as we continue to refine this new version of the GARD website.
Disease at a Glance
Summary
Mycosis fungoides is a disease in which T-cell lymphocytes (a type of white blood cell) become malignant (cancerous) and affect the skin. This condition is one of the most common types of T-cell lymphoma. Mycosis fungoides is characterized by a scaly, red rash that develops on the skin, particularly on areas that are not usually exposed to the sun. Over time, a thin, reddened, eczema-like rash may develop, followed by thickened, red patches of skin.
About Mycosis fungoides
Many rare diseases have limited information. Currently GARD is able to provide the following information for Mycosis fungoides:
- Population Estimate:In the US, there are less than 5,000 with this disease.
- Symptoms:May start to appear as an Adult.
- Experts:Patient organizations are available to help find a specialist for this condition.
- Organizations:Organizations specific to this condition are available to help find support.
- Categories:Skin Disease
Hematologic Disease Cancer
When do symptoms of this disease begin?
The most common ages for symptoms of a disease to begin is called age of onset. Age of onset can vary for different diseases and may be used by a doctor to determine the diagnosis. For some diseases, symptoms may begin in a single age range or several age ranges. For other diseases, symptoms may begin any time during a person's life.
Prenatal
Before Birth
Newborn
Birth-4 weeks
Infant
1-23 months
Child
2-11 years
Adolescent
12-18 years
Adult Selected
19-65 years
Older Adult
65+ years
Symptoms may start to appear as an Adult.
Symptoms
These symptoms may be different from person to person. Some people may have more symptoms than others and symptoms can range from mild to severe. This list does not include every symptom.
This disease might cause these symptoms:
This disease might cause these symptoms:
Blood and Tissue... Blood and Blood-Forming Tissue
22 Symptoms
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List View
Blood and Blood-Forming Tissue
The blood and blood-forming tissue includes plasma, red blood cells, white blood cells, platelets, and bone marrow. Common symptoms of problems with the blood or blood forming tissue include fatigue, weakness, shortness of breath, fever, abnormal bleeding, headache, or bruising easily. Diseases of the blood may be diagnosed and treated by a hematologist.
22 Symptoms
Causes
This section is currently in development.
Advocacy and Support Groups
How can a patient organization be helpful?
Patient advocacy and support organizations offer many valuable services and often drive the research and development of treatments for their disease(s). Because these organizations include the life experiences of many different people who have a specific disease, they may best understand the resources needed by those in their community. Although missions of organizations may differ, services may include, but are not limited to:
- Ways to connect to others and share personal stories
- Easy-to-read information
- Latest treatment and research information
- Lists of specialists or specialty centers
- Financial aid and travel resources
What do disease-specific organizations do?
Some organizations build a community of patients and families impacted by a specific disease or group of related diseases. These organizations usually have more disease-specific information and services, including helping new members find others who have the same disease.
What do organizations that focus on a medical condition do?
Some organizations build a community of patients and families impacted by a medical condition, like epilepsy, or related conditions, like heart problems, that may also be a symptom in other diseases. These organizations usually have information and services focused more on the medical condition(s), but may also have information about associated diseases.
What do umbrella organizations do?
Rare disease umbrella organizations focus on improving the lives of all those impacted by rare diseases through education and advocacy efforts. Umbrella organizations provide a range of services for patients, families, and disease-specific organizations.
Patient Organizations
5 Organizations
Organization Name
Organization Type
Service
Country
Language
Cutaneous Lymphoma Foundation
https://www.clfoundation.org/Disease Specific
Mycosis Fungoides
Service
Information
Research
Specialist
Country
United States
Language
English
EveryLife Foundation for Rare Diseases
https://everylifefoundation.org/Umbrella
Mycosis Fungoides
Service
Information
Country
United States
Language
English
Spanish
Global Genes
http://globalgenes.org/Umbrella
Mycosis Fungoides
Service
Information
Country
United States
Language
English
Genetic Alliance
http://www.geneticalliance.org/Umbrella
Mycosis Fungoides
Service
Information
Country
United States
Language
English
National Organization for Rare Disorders
https://rarediseases.org/Umbrella
Mycosis Fungoides
Service
Information
Research
Country
United States
Language
English
Spanish
5 Organizations
Research
Why is Research Important for Rare Diseases?
Research increases what we know about rare diseases so that people can get a diagnosis more quickly and can know what to expect. Research also helps doctors better understand how well a treatment works and can lead to new treatment discoveries. It may even help improve diagnosis and treatment of more common diseases.
How do you find the right clinical study?
Current clinical studies can be found by using ClinicalTrials.gov (see below). Doctors, other trusted medical professionals, and patient organizations may also be aware of studies.
To determine whether a study may be appropriate:
- Discuss the clinical study with a trusted medical provider before enrolling
- Review the "Study Description," which discusses the purpose of the study, and "Eligibility Criteria," which lists who can and cannot participate in the study
- Work with the research coordinator to review the written informed consent, including the risks and benefits of the study
- Inquire about the specific treatments and procedures, location of the study, number of visits, and time obligation
- Determine whether health insurance is required and whether there are costs to the participant for the medical care, travel, and lodging
- Ask questions. Remember, it is okay to decide not to participate in research
For More Information
How Do You Find the Right Clinical Study?
Current clinical studies can be found by using ClincalTrials.gov. Doctors, other trusted medical professionals, and patient organizations may also be aware of studies. Researchers from participating institutions use the database to search for patients or healthy volunteers who meet their study criteria.
How do you find the right clinical study?
Current clinical studies can be found by using ClinicalTrials.gov (see below). Doctors, other trusted medical professionals, and patient organizations may also be aware of studies.
To determine whether a study may be appropriate:
- Discuss the clinical study with a trusted medical provider before enrolling
- Review the "Study Description," which discusses the purpose of the study, and "Eligibility Criteria," which lists who can and cannot participate in the study
- Work with the research coordinator to review the written informed consent, including the risks and benefits of the study
- Inquire about the specific treatments and procedures, location of the study, number of visits, and time obligation
- Determine whether health insurance is required and whether there are costs to the participant for the medical care, travel, and lodging
- Ask questions. Remember, it is okay to decide not to participate in research
For More Information
How Do You Find the Right Clinical Study?
Current clinical studies can be found by using ClincalTrials.gov. Doctors, other trusted medical professionals, and patient organizations may also be aware of studies. Researchers from participating institutions use the database to search for patients or healthy volunteers who meet their study criteria.
ClinicalTrials.gov provides current information on clinical research studies in the United States and abroad. Talk to a trusted doctor before choosing to participate in any clinical study. Check this site often for new trials that become available.
ClinicalTrials.gov provides current information on clinical research studies in the United States and abroad. Talk to a trusted doctor before choosing to participate in any clinical study. Check this site often for new trials that become available.
The National Library of Medicine's Unified Medical Language System (UMLS) is used to classify and organize diseases and disease categories.
Data from Orphanet and Human Phenotype Ontology (HPO) are used to provide information on a disease's symptoms, genes, inheritance, population estimates, and more.
National Academies of Sciences, Engineering, and Medicine. 2015. Improving Diagnosis in Health Care. Washington, DC: The National Academies Press.
U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (2015). Health Literacy Online: A Guide for Simplifying the User Experience.
- Reference: Access aggregated data from Orphanet at Orphadata. Orphanet is an online database of rare diseases and orphan drugs. Copyright, INSERM 1997.
- Reference: Download data from HPO. Kohler S, Gargano M, Matentzoglu N, et al., The Human Phenotype Ontology in 2021, Nucleic Acids Research, Volume 49, Issue D1, 8 January 2021, Pages D1207–D1217.
- Reference: MedGen Data Downloads and FTP
- Reference: Data from the Newborn Screening Coding and Terminology Guide is available here. Downs SM, van Dyck PC, Rinaldo P, et al. Improving newborn screening laboratory test ordering and result reporting using health information exchange . J Am Med Inform Assoc. 2010 Jan-Feb;17(1):13-8.
National Academies of Sciences, Engineering, and Medicine. 2015. Improving Diagnosis in Health Care. Washington, DC: The National Academies Press.
U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. (2015). Health Literacy Online: A Guide for Simplifying the User Experience.
Last Updated: February 2023