Mastocytosis is the term for a diverse group of conditions where a single (or clonal) population of mast cells accumulates in one or more tissues, for example skin, bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
The severity of symptoms depend on the number of mast cells in the tissues. A high load of mast cells leads to more severe symptoms. Cutaneous mastocytosis causes itching, swelling and blistering of the affected skin, particularly when it is rubbed or scratched.
Most patients with Mast Cell Disorders (MSD) are children with single or only a few lesions. However, the spectrum of MCDs is very broad.
Dermnet.org has a thorough and helpful section.
We spent some time trying to find the most useful site for patients and their families. There are many.
If you live in the U.S. The Mastocytosis Society (TMS) seems to fit the bill. "TMS's mission is to foster research, education, and advocacy for our patients, their families, caregivers and physicians. TMS aspires to make content easier to find and share important resources related to our cause. Founded in 1995, TMS has sought to fill a massive void with some answers to the many questions about this rare disease. We hope you find the provided information and resources beneficial and ask that you support us in our efforts to raise awareness and serve our Mastocytosis community.
The Mastocytosis Society's mission is to foster research, education, and advocacy for our patients, their families, caregivers and physicians. TMS aspires to make content easier to find and share important resources related to our cause. Founded in 1995, TMS has sought to fill a massive void with some answers to the many questions about this rare disease. We hope you find the provided information and resources beneficial and ask that you support us in our efforts to raise awareness and serve our Mastocytosis community. - See more at: http://www.tmsforacure.org/welcome.php#sthash.JKDmTBna.dpuf
The Mastocytosis Society's mission is to foster research, education, and advocacy for our patients, their families, caregivers and physicians. TMS aspires to make content easier to find and share important resources related to our cause. Founded in 1995, TMS has sought to fill a massive void with some answers to the many questions about this rare disease. We hope you find the provided information and resources beneficial and ask that you support us in our efforts to raise awareness and serve our Mastocytosis community. - See more at: http://www.tmsforacure.org/welcome.php#sthash.JKDmTBna.dpuf
The Mastocytosis Society's mission is to foster research, education, and advocacy for our patients, their families, caregivers and physicians. TMS aspires to make content easier to find and share important resources related to our cause. Founded in 1995, TMS has sought to fill a massive void with some answers to the many questions about this rare disease. We hope you find the provided information and resources beneficial and ask that you support us in our efforts to raise awareness and serve our Mastocytosis community. - See more at: http://www.tmsforacure.org/welcome.php#sthash.JKDmTBna.dpuf
The Mastocytosis Society's mission is to foster research, education, and advocacy for our patients, their families, caregivers and physicians. TMS aspires to make content easier to find and share important resources related to our cause. Founded in 1995, TMS has sought to fill a massive void with some answers to the many questions about this rare disease. We hope you find the provided information and resources beneficial and ask that you support us in our efforts to raise awareness and serve our Mastocytosis community. - See more at: http://www.tmsforacure.org/welcome.php#sthash.JKDmTBna.dpuf