800,000 Sufferers in Ireland Remain Undiagnosed

Have you friends or colleagues who suffer chronic pain, chronic fatigue, or other debilitating issues? If so, they could be one of the 800,000 Irish suffers of a new disease – Mast Cell Activation Syndrome (MCAS) who remain undiagnosed.

At the Blackrock Clinic recently, Mr Jimmy Sheehan in his introduction of Dr Lawrence Afrin , (a widely-respected global authority in the rapidly emerging field of mast cell science), said that the last time he learned about a new disease was over 40 years ago when he first heard about AIDS. “Rarely in one’s professional lifetime is a new disease or syndrome identified”.

MCAS is a modern epidemic, a chronic illness that affects at least 17% of the population (Prof Mouldering’s, Bonn University) which is approximately 800,000 people in Ireland. It manifests itself as chronic pain, chronic fatigue, chronic inflammation and is probably the root of cause of many thousands of sufferers of sicknesses such as IBS, Asthma, Fibromyalgia, Depression, Obesity and many more diseases.  It is a genetic blood disorder and within the overall MCAS population, it targets the most vulnerable – infants, the elderly and those with other systemic weaknesses and their family members. It is relatively unknown, especially in Ireland but it affects many hundreds of thousands of the Irish population with many remaining undiagnosed. The diagnosis and treatment for MCAS needs to be highlighted.

After the lecture Dr Deirdre O’Donovan, Gastroenterology specialist in the Blackrock Clinic, said during the Q&A with Dr Afrin – “a light bulb went on in my mind as you were talking”.

Diane Kane, from the US is on a personal mission to raise awareness of the disease in Ireland as she suffered with it for 46 years and was only recently diagnosed. Diane said that “we have friends and family living in Ireland who cannot find any MCAS knowledgeable doctors in the country. We know that there are a great many people on the MCAS online forums, searching for the appropriate medical care in Ireland and abroad and with at least 17% of the general population on the MCAS spectrum it means that potentially there are over 800,000 sufferers in Ireland who are desperately in need of MCAS screening and treatment.”

“As MCAS has only been a clinically diagnosable condition since 2009 and most medical schools are  not teaching the current mast cell science, the vast majority of practicing doctors have little or no knowledge of MCAS which is proving to be a major barrier to diagnosis and treatment for an increasingly debilitated population of sick people. For most people with MCAS it remains an undiagnosed driver of illness due to a lack of access to appropriate medical treatment. Dr. Jimmy Sheehan and the Blackrock Clinic are displaying bold leadership in tackling this critical need and hopefully, these events can lead to increased and improved access to care for the more than 800,000 sick and suffering patients in Ireland.”

Notes

Dr. Afrin, author of the book Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity, is a widely-respected global authority in the rapidly emerging field of mast cell science. Mast Cell Activation Syndrome (MCAS) results in a chronic and progressive disease syndrome of varying multisystemic presentations triggered by a myriad of environmental stressors and offenders. The proper diagnosis and treatment of MCAS can lead to a significant improvement in the quality of life for many long-term, chronically ill patients, as well as allow for greater prevention which serves to both ameliorate widespread suffering as well as unburden our overwrought healthcare systems.