Jemma shares her struggles with mast cell activation syndrome, her diagnosis, and what you can do to support Jemma and others like her by signing her petition.
Jemma Garrett is an MSc Criminal Psychology Distance Learning student at the University of Portsmouth. Here Jemma shares her struggles with mast cell activation syndrome, her diagnosis, and what you can do to support Jemma and others like her by signing her petition to the Government.
For the past few years, I've been silently battling a myriad of health challenges while striving to pursue my studies as an undergraduate and now as a MSc student. Behind the scenes of academic achievements and smiling photos, lies a reality marked by chronic pain, rashes, digestive issues, swellings, neurological problems and many more – all symptoms of mast cell activation syndrome (MCAS).
What is mast cell activation syndrome?
MCAS, a condition where mast cells inappropriately release chemical mediators in response to non-threatening external stimuli, has wreaked havoc on my daily life, making studying a monumental task. It is a condition that can occur due to many factors including (but not limited to) Covid/Long Covid, glandular fever, trauma, surgery, menopause, and is also closely linked with fibromyalgia, functional neurological disorder, chronic fatigue (ME), Ehlers-Danlos syndrome, lupus, lymes disease, hormonal conditions and many more.
Struggling with the condition
The relentless onslaught of bone and body pain has made even the simplest tasks a Herculean effort. I wake up most days with my body feeling like it's been run over by a truck, with no respite in sight.
My skin has become a battleground, with rashes appearing seemingly out of nowhere. Itching and discomfort have made focusing on my studies nearly impossible at times. Swelling (angioedema) of the eyes, lips and legs is a further challenge I have been facing.
Tummy troubles, as innocuous as they may sound, have been a constant companion. From nausea and vomiting to diarrhoea and abdominal cramping, every meal becomes a gamble: with the potential for hours of agony to follow.
Vestibular migraines, loss of vision, and vertigo have literally turned my world upside down. Trying to concentrate on lectures or conduct presentations whilst feeling like the room is spinning around me, or battling excruciating migraines that have rendered me unable to even open my eyes, have become ongoing features of my daily life.
The hormonal roller coaster induced by MCAS has added another layer of complexity to my already challenging journey, leaving me fatigued and struggling to achieve the most basic of tasks.
Due to the nature of MCAS and our inability to process histamine properly, many sufferers (including myself) are unable to eat ‘normal’ food, use normal cleaning and personal hygiene products, and some even react to fragrance, adding an extra layer of complexity. Eating these foods puts some sufferers at risk of life threatening anaphylaxis, meaning all food has to be low histamine, organic, and freshly prepared. The inability to take part in spontaneous takeaways or dine out further complicates an already intricate situation.
Receiving a diagnosis
After years of uncertainty and anxiety, countless trips to A&E, multiple different diagnoses, 4 operations, over 40 tests, and more than 11 consultations with specialists, I finally received the correct diagnosis, thanks to the relentless pursuit of answers and the support of fellow MCAS warriors like George Cooper. However, the journey to diagnosis was filled with frustration and despair, impacting not only my academic pursuits, but also my quality of life, not to mention the financial burden of funding private testing and treatment.
Despite the diagnosis, I am still navigating the unpredictability of this illness and seeking a treatment that I can tolerate without suffering crippling side effects. I've faced the challenge of invisible illness – outwardly appearing fine while battling excruciating symptoms behind closed doors. The unpredictability of MCAS means that plans are often cancelled, and days can be spent bedridden in agony, a reality not readily apparent to others. The toll on my mental wellbeing has been devastating at times.
Amidst the struggles, one driving force has kept me going – my son. His presence has been my anchor in the storm, motivating me to push forward even on the darkest days.
How you can help
I am reaching out to you, my university community, for support. I ask for your help in raising awareness and advocating for better treatment and diagnosis options for MCAS sufferers. By signing and sharing our petition to create awareness and improve treatment for MCAS, you can make a tangible difference in the lives of countless individuals like myself.
Together, we can make a difference. Your support would mean the world to me and to all those battling MCAS.
You can sign and share our petition online:
Thank you for your kindness, understanding, and support.