Incurable
Debilitating
Painful
Stressful
Different for everyone
Difficult to diagnose
And therefore can often by missed by older people as simply a “sign of ageing”. So here is what we all need to know.
Mast Cell Activation Syndrome
There have been no large-scale epidemiological studies on the prevalence of Mast Cell Activation Syndrome (MCAS) in the UK. However, some studies have suggested that MCAS may be underdiagnosed and that its prevalence may be higher than previously thought. This maybe because MCAS is a challenging condition to diagnose due to its broad range of symptoms and the lack of specific diagnostic criteria.
What are mast cells?
Mast cells are a type of white blood cell found throughout the body. A key part of the immune system, mast cells detect different types of triggers and tell other immune cells how to respond. In response to a trigger, mast cells release a range of chemicals called mast cell mediators. Hundreds of different mediators can be released, including the more commonly known histamine.
What is Mast Cell Activation Syndrome?
Mast cell activation syndrome (MCAS) is an immune disorder in which mast cells are activated by triggers such as food or chemicals in the environment. Symptoms are wide-spread and can be life-threatening with no two people experiencing exactly the same set of symptoms and symptoms changing over time. Symptoms commonly experienced include fatigue, food intolerances, brain fog, pain, flushing, hives and itching.
What is the cause of Mast Cell Activation Syndrome?
The exact cause of MCAS is not fully understood, but it could be related to a combination of genetic and environmental factors. Some possible triggers that can activate mast cells include infections, stress, physical exertion, certain medications, exposure to allergens, and changes in temperature.
There may also be under lying conditions that contribute to MCAS, such as autoimmune disorders, gastrointestinal disorders, and other chronic inflammatory conditions. In some cases, MCAS may be a secondary condition to other mast cell disorders, such as Mastocytosis.
How is Mast Cell Activation Syndrome diagnosed?
MCAS can be difficult to diagnose as many of the symptoms can overlap with those of other conditions, like allergies, autoimmune disorders, and chronic infections. Diagnosis of MCAS is typically made through a combination of clinical assessment, medical history, positive response to treatment and testing for mast cell mediators.
What treatments are available?
At present, there is no cure for MCAS.
The aim of treatment is to reduce the frequency and severity of each person’s unique symptoms in order to improve their quality of life.
For many people this can be achieved using a combination of medical management, avoiding recognised triggers, dietary changes, managing stress and using complementary therapies.
Multiple medicines can be used to help alleviate the symptoms of MCAS. These include mast cell stabilisers; which help restore stability to the mast cell and reduce its reactivity to different triggers, and mediator blockers; which block the release or the effect of different mediators released by the mast cell.
You can find more help and advice by contacting Mast Cell Action
Mast Cell Action was established in 2016 to provide practical and emotional support to people of all ages affected by Mast Cell Activation Syndrome (MCAS). Mast Cell Action is determined to offer support to the mast cell disease community, their families, doctors and researchers. To raise awareness of disorders resulting from mast cell activation, increase vital research in this area and strive for better diagnostics and treatment.
Mast Cell Action provides support to the MCAS Community and works to raise awareness and understanding of MCAS amongst relevant professionals and organisations. Their dedication to the MCAS community extends far beyond words; it’s at the heart of everything they do. They provide support is multiple ways and are led by the voice of the MCAS community. Through virtual sessions, supportive resources and awareness-raising activities, Mast Cell Action are here for everyone in the UK living with MCAS.
Mast Cell Action’s vision is of a world where everyone affected by Mast Cell Disease has their symptoms acknowledged and experiences listened to, to achieve a correct diagnosis, and to receive the care and support that they need. Find out more at mastcellaction.org.
