International Support and Advocacy for Mast Cell Disease Patients and Caregivers
Support for patients, caregivers, and families affected by mast cell disease, from healthcare providers, patient associations collaborating on an international level, and online forums, can offer key mechanisms through which disease management can be successfully enhanced. Mast cell diseases, including mastocytosis and mast cell activation syndrome (MCAS), are rarely diagnosed maladies involving aberrant cellular growth, activation, and/or function, resulting in heterogeneous symptomatology and presentation. Seen by many specialties, especially allergy/immunology, dermatology, hematology, and gastroenterology, many healthcare providers may not recognize these diseases, necessitating enhanced advocacy by specialists, patients, caregivers, and patient associations. Internationally, patient associations have allied with medical partners, government, and industry entities to help facilitate the patient’s journey, with the goals of diminishing time to diagnosis, improving care, decreasing stress, and enhancing patient/caregiver quality of life.
KeywordsMast cell disease Mastocytosis Mast cell activation syndrome Hereditary α-tryptasemia Support group Advocacy Patient support Caregiver Physician Rare disease
The authors thank Jan Hempstead, Rita Barlow, Cheri Smith, Gail Barbera, Rachel Zack, Laureen LaBrash, and Jonathan Lyons for their contributions to and assistance with the preparation of this manuscript.
SVJ: Research Chair, The Mastocytosis Society, Inc.; VMS: Chair, Board of Directors, The Mastocytosis Society, Inc.; JSH: Co-Chair, The UK Mastocytosis Support Group; LMT: President, Associação Brasileira de Mastocitose (Brazilian Mastocytosis Association); DWM: Chair, The Australasian Mastocytosis Society; MMM: Board Member, Asociación Española de Mastocitosis y Enfermedades Relacionadas (Spanish Association for Mastocytosis and Related Diseases); SL-R: Director/President, Mastocytosis Society Canada. The authors have no additional conflicts of interest related to the topics covered in this chapter.
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