MCAD:
Information, resources, and expose about doctors who haven’t been trained to recognize and treat Mast Cell Activation Disease
Information for you…hope and pray you never need it. Dr. Lawrence B. Afrin’s book is written for the public and entitled Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity. Dr. Afrin is an oncologist and hematologist who took it upon himself to do some research on MCAD and write the above titled book. I haven’t read the book, but my friend has and apparently Dr. Afrin also wrote about the increase of chronic illnesses which are becoming so prevalent as to qualify as epidemics.
Dr. Anne Maitland, Tarrytown, New York, is a nationally recognized physician with specialties as an allergist and immunologist. She said on a podcast that it took her 10 years to study and train herself about MCAD. In other words, MCAD diagnosis and treatment is apparently not taught in medical school. That’s part of why I said on Saving Susan Heroes, Join the Team page that it was hard to find a physician who could diagnose MCAD, much less treat it in any way helpful to the patient.
Dr. Maitland also said, “The patient [or parent] may have to search out of state to locate a physician who is familiar with the disease.” *You tube: Mast Cell Activation Syndrome: More Than Just Allergies, with Dr. Anne Maitland, MD. July 11, 2018. She is the medical director of Comprehensive Allergy and Asthma Care, East Chester in Tarrytown, N.Y., Asst. Professor Department of Medicine—Clinical Immunology Icahn School of Medicine, Mr. Sinai, and attending physician at Felts Memorial Hospital, (as of the time of the broadcast).
Many rare diseases are completely unknown to physicians and hospital staff. Many rare diseases, such as MCAD have strange combinations of symptoms which may be different from person to person. You can research your strange symptoms at NORD, the NATIONAL ORGANIZATION FOR RARE DISEASES.
When you as a sufferer go from one doctor and specialist to another and another trying to describe your symptoms, the doctors cannot look up a pat description of your complex symptom clusters in his/her computerized physicians’ desk reference. Without an answer from the desk reference and never having seen or studied your condition, and with seemingly normal lab reports and scans, how can they diagnose it correctly?
Without having taken it upon themselves to study and research extensively AFTER MEDICAL SCHOOL “rare diseases” with complex clusters of symptoms that aren’t even universally similar from one patient to another, doctors CANNOT DIAGNOSE MANY RARE DISEASES. This applies to physicians on staff at hospitals as well. After one hour on the NORD web site, selecting each letter of the alphabet and glancing over all the “RARE” diseases listed under each letter, you will understand WHY doctors do not recognize what is wrong with a presenting patient who is complaining about clusters of strange and complex symptoms the doctor may find unbelievable.
The doctor is not likely to go home every night after work for the next 6 weeks pouring over all the tedious descriptions on the NORD web site trying to figure out what’s wrong with you. It’s easier, faster, just to refer you to some other specialist or write you a prescription for some drug to mask one or more of your bizarre sounding symptoms. Of course, those drugs may do you more harm than good, since they weren’t prescribed based on a thorough understanding and/or years of clinical experience treating people with your same “rare” “mystery” disease
It may fall to you the patient or parent of a sick child to become a type of medical research detective, in order to be equipped to search for the rare physician who might have clinical experience with your hard-to-diagnose “mystery disease.” You may have to contact whatever research institute or university team of scientists whose information you found on NORD to see if they know of a clinically practicing physician whom you can go see. You have our deepest sympathy and understanding.