title: The Mastocytosis Society survey on mast cell disorders: patient experiences and perceptions.
abstract: BACKGROUND
  Mast cell diseases include mastocytosis and mast cell activation syndromes, some of which have been shown to involve clonal defects in mast cells that result in abnormal cellular proliferation or activation. Numerous clinical studies of mastocytosis have been published, but no population-based comprehensive surveys of patients in the United States have been identified. Few mast cell disease specialty centers exist in the United States, and awareness of these mast cell disorders is limited among nonspecialists. Accordingly, information concerning the experiences of the overall estimated population of these patients has been lacking.
  
  
  OBJECTIVE
  To identify the experiences and perceptions of patients with mastocytosis, mast cell activation syndromes, and related disorders, The Mastocytosis Society (TMS), a US based patient advocacy, research, and education organization, conducted a survey of its members and other people known or suspected to be part of this patient population.
  
  
  METHODS
  A Web-based survey was publicized through clinics that treat these patients and through TMS's newsletter, Web site, and online blogs. Both online and paper copies of the questionnaire were provided, together with required statements of consent.
  
  
  RESULTS
  The first results are presented for 420 patients. These results include demographics, diagnoses, symptoms, allergies, provoking factors of mast cell symptoms, and disease impact.
  
  
  CONCLUSIONS
  Patients with mastocytosis and mast cell activation syndromes have provided clinical specialists, collaborators, and other patients with information to enable them to explore and deepen their understanding of the experiences and perceptions of people coping with these disorders.
authors.affiliation: The Mastocytosis Society, Inc, Hastings, Neb.
authors.forename: Susan
authors.initials: S
authors.lastname: Jennings
authors.affiliation: The Mastocytosis Society, Inc, Hastings, Neb.
authors.forename: Nancy
authors.initials: N
authors.lastname: Russell
authors.affiliation: The Mastocytosis Society, Inc, Hastings, Neb.
authors.forename: Blair
authors.initials: B
authors.lastname: Jennings
authors.affiliation: The Mastocytosis Society, Inc, Hastings, Neb.
authors.forename: Valerie
authors.initials: V
authors.lastname: Slee
authors.affiliation: The Mastocytosis Society, Inc, Hastings, Neb.
authors.forename: Lisa
authors.initials: L
authors.lastname: Sterling
authors.affiliation: Division of Rheumatology, Immunology, and Allergy, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, Mass.
authors.forename: Mariana
authors.initials: M
authors.lastname: Castells
authors.affiliation: Division of Hematology and Hemostaseology, Department of Internal Medicine I, Medical University of Vienna, Vienna, Austria.
authors.forename: Peter
authors.initials: P
authors.lastname: Valent
authors.affiliation: Division of Rheumatology, Immunology, and Allergy, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, Mass. Electronic address: cakin@partners.org.
authors.forename: Cem
authors.initials: C
authors.lastname: Akin
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006306:Health Surveys; D006801:Humans; D007223:Infant; D020407:Internet; D008297:Male; D008415:Mastocytosis / Q000175:diagnosis / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D010465:Perception; D011379:Prognosis; D011788:Quality of Life; D012307:Risk Factors; D012955:Societies, Medical; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: AFIRMM; Allergy; Anaphylaxis; Association Française pour les Initiatives de Recherche sur le Mastocytes et les Mastocytoses; CM; Cutaneous mastocytosis; Food intolerance; IA; Idiopathic anaphylaxis; Ig; Immunoglobulin; Insect venom; MC; MCA; MCAD; MCAS; MCD; Mast cell; Mast cell activation; Mast cell activation disorder; Mast cell activation syndrome; Mast cell disorder; Mast cell disorders; RAST; REMA; Radioallergosorbent test; Red Española de Mastocitosis; SM; Survey; Systemic mastocytosis; TMEP; TMS; Telangiectasia macularis eruptiva perstans; The Mastocytosis Society; The Mastocytosis Society, Inc; Trigger; UP; Urticaria pigmentosa