mycosis fungoides
The National Organization for Rare Disorders (NORD) has published a guide for physicians treating patients with cutaneous T-cell lymphoma (CTCL).
The guide contains information about disease classification, signs and symptoms of CTCL, methods of diagnosing the disease, standard therapies, and investigational therapies for CTCL.
The guide also includes a list of resources for physicians and patients.
“The NORD Physician Guide to Cutaneous T-Cell Lymphoma (CTCL)” is available for free on the NORD Physician Guides website.
The guide was made possible by an educational grant from Therakos, now a part of Mallinckrodt Pharmaceuticals.
The guide was developed in collaboration with Oleg E. Akilov, MD, PhD, of the University of Pittsburgh School of Medicine in Pennsylvania.
“Eczema and even some cases of psoriasis may look very similar to mycosis fungoides, the most common type of cutaneous T-cell lymphomas,” Dr Akilov noted.
“It is important to be aware of these similarities and to be ready to think about cutaneous lymphoma when a patient with ‘common dermatosis’ does not respond to regular treatments.”
About NORD guides
NORD established its physician guide series as part of a broader strategic initiative to promote earlier diagnosis and state-of-the-art care for people with rare diseases. Each online guide is written or reviewed by a medical professional with expertise on the topic.
Other recent guides in the series include:
- The NORD Physician Guide to Mitochondrial Myopathies
- The NORD Physician Guide to Paroxysmal Nocturnal Hemoglobinuria (PNH)
- The NORD Physician Guide to Atypical Hemolytic Uremic Syndrome (aHUS)
- The NORD Physician Guide to Nontuberculous Mycobacterial Lung Disease.
“People who have rare diseases often go for many years without a diagnosis,” said Marsha Lanes, a genetic counselor in NORD’s Educational Initiatives Department.
“The purpose of NORD’s free online physician guides is to reduce the time to diagnosis and encourage optimal treatment for patients with little-known and little-understood rare diseases.”
