Dag 21

Eller: Böcker om mastocytos och MCAS

Böcker om mastocytos & MCAS

Vi har haft mastocytos och MCAS på YouTube, nu blir det boktips för dem som föredrar att läsa på riktigt papper! (En del av böckerna finns dock även som e-böcker.)

Några är faktaböcker, några är mer lättlästa. Alla böcker länkar till Adlibris (klicka på bilderna). Vi har inget samarbete med dem på något vis, utan jag ville bara länka till en svensk webbshop eftersom jag tror att en del kanske hellre beställer därifrån (enklare att reklamera om något blir fel, man kan ta på faktura,…). Eftersom alla böcker är skrivna på engelska och ges ut av amerikanska eller brittiska förlag är sannolikheten mycket stor att ni hittar dem lite billigare på t ex Amazon.

Faktaböcker

Never Bet Against OCCAM: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity av Dr. Lawrence B. Afrin m fl, 2016

Skriven så att även “vanligt” folk förstår.

“In 2008 Dr. Afrin started coming to understand that a newly recognized type of mast cell disease, now called mast cell activation syndrome (MCAS), was the underlying diagnosis in many patients he was seeing who were each suffering large assortments – quite different from one patient to the next – of chronic multisystem inflammatory illnesses of unclear cause. Dr. Afrin soon gained experience that MCAS is far more prevalent than the only mast cell disease previously known to medicine (the rare disease of mastocytosis) and that most MCAS patients, once accurately diagnosed, can eventually find significantly helpful medications targeted at the disease. The frequency and magnitude of the improvements Dr. Afrin has seen – even the relief that comes from finally having a unifying diagnosis other than “psychosomatism” – have spurred him to focus in this area, not only tending to the needs of his patients but also pursuing research to advance our understanding of the disease and helping to educate other professionals who in turn can help even more of the many people who have long been suffering not only the symptoms of the disease but also the natural concern of not understanding why one would be so “unlucky” to have acquired so many medical problems. As it turns out, such patients are not so unlucky and truly have just one root issue (and a very common one at that), which has the biological capability to develop, directly or indirectly, into most or all of their previously diagnosed problems. There is a great deal yet to learn about this, but even with just the present very limited understanding, the opportunity to diagnose and help patients with MCAS seems to be enormous and Dr. Afrin felt a description of the disease, written for the general public, might help lead some MCAS patients on a journey to diagnosis and improvement sooner rather than later. Dr. Afrin hopes this book will help people who might have, or do have, MCAS. A portion of the proceeds of purchases of this book will go to support research and education in this area.”

Mastocytosis, an Issue of Immunology and Allergy Clinics av Dr. Cem Akin, 2014

Riktar sig mer till vårdpersonal. Eller nördar.

Mastocytosis Cem Akin

“This issue of Immunology and Allergy Clinics, edited by Dr. Cem Akin, is devoted to Mastocytosis. Articles in this issue include Human Mast Cell Signal Transduction; Mast cell tryptase role in homeostasis and coagulation; Mastocytosis: Current Classification and Diagnostic criteria; Epidemiology, risk factors and prognosis of mastocytosis; Mast cell sarcoma: Clinical management; Molecular defects in mastocytosis: c-kit mutations and beyond; Flow cytometry in mastocytosis: Utility as a diagnostic and prognostic tool; Morphology of mastocytosis with special reference to immunophenotypical aberrancies; CD30 expression in mastocytosis; Extramedullary mastocytosis: Pathologic aspects; Bone involvement and osteoporosis in mastocytosis; Drug allergy in mastocytosis; Eosinophilia in mastocytosis; Venom allergy and mastocytosis; Skin disease in mastocytosis; Treatment of advanced mastocytosis; Treatment strategies of mediator related symptoms in mastocytosis; and Neuro and psychological involvement in Mastocytosis.”

Lite mer lättläst och underhållande

My Invisible Cosmic Zebra Has Mast Cell Activation Syndrome – Now What? av Jessie Riley, 2017

Riktar sig framför allt till tonåringar och unga vuxna!

My invisible cosmic zebra has mast cell activation syndrome

“If you’ve ever felt overwhelmed or clueless about how to navigate through life after being diagnosed with mast cell activation syndrome, an invisible illness, “My Invisible Cosmic Zebra Has Mast Cell Activation Syndrome—Now What?” is for you. Written from a non-medical perspective, teens and young adults can use the 100-page creative workbook as a resource tool for understanding the myriad of funny-but-not-so-funny non-medical challenges they might encounter after diagnosis.”

My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders av Daniel & Pamela Hodge, 2015

My crazy life - mast cell disorders

“Follow Pam through an intriguing tale of allergic reactions and anaphylaxis. At the age of 40 she developed many allergies to foods, medications and even her husband! She became salicylate sensitive and histamine intolerant overnight. Suddenly, she found herself unable to live in her home, and unable to eat most foods. Pam had severe reactions to many foods and medications and yet every allergy test came back negative. Mast cell disorder – the rare disorder that never follows the rules. She has created this guide for the patient by organizing and consolidating the relevant information that is scattered about the web. She has also created this guide for the family and friends of the patient, to help them to understand the bizarre symptoms and what they can do to help. It is a humorous look into the lives of the people who are the exception to the rule.”

Surviving Medical Care: A Mastocytosis Patient’s Journey in the Medical System av Ruth Brown, 2015

Surviving medical care - mastocytosis

“Author Ruth Brown was born with mastocytosis, a rare, complex, and little-known disease responsible for producing a multitude of diverse symptoms. As a result of her condition, she experienced many incredible encounters with medical professionals and institutions. In Surviving Medical Care, she writes of the nearly fifty-five years she spent seeking medical attention for a series of seemingly unrelated and sporadic symptoms. While living a relatively normal life as a wife, mother, and software developer, she coped with the challenges of her affliction. As her condition worsened, she desperately sought a correct medical diagnosis and appropriate treatment.”