Alyssa's Story

I’ve been able to make a good life for myself. I run my own company and part of that is because working from home is much easier than going to an office.

HOW IT BEGAN

For my entire life I've been extremely sensitive to food and environmental toxins. I had eczema and other rashes as a baby, frequent lung and chest infections, poor digestive motility, and chronic stomach aches that all got worse with age. I also suffer from insomnia, anxiety and depression, fatigue, and dizziness. Throughout my life I would often have my face, hands and legs swell up - gaining and losing 10 pounds over the course of a day - having no idea why.   

Doctors repeatedly put my symptoms down to anxiety, and made me feel like I was making them up. But I can say with certainty that this is what is happening to me.

A certain food group would be ok with me one day, then the next I would swell and feel really tired, just like I’d gotten hit by a truck.

TOWARDS A DIAGNOSIS

As I grew up I took control of my own diet and health, which led me down a 15-year path of trial and error to figure out what was going on with me. One of the main things that was always a mystery to me was why my body reacts to so many things. 

I’ve learned that stress is a huge trigger for me along with fragrances and cleaning products, so I try to keep stress to a minimum and I've even completely changed the cleaning products I use. Other triggers for me include high histamine foods, gluten, grains and nuts of all kinds, beans, processed foods, and damp weather. 

In the past I've tried things like going for massages to alleviate my joint pain; I also tried taking antihistamines for a few days and found many of my symptoms cleared up. Now I like to manage my condition with less medication, I have been on a low histamine diet that has made a massive difference for me. 

My life follows a routine where I need to get 9 hours of sleep and work from home to avoid symptom flares.

GETTING SUPPORT

It has taken many years for me to figure out how to live my life around my condition. I am able to do what I want to do in my life, but it is made much harder than people realise. 

My life follows a routine where I need to get 9 hours of sleep and work from home to avoid symptom flares. Otherwise, I am overwhelmed with even more symptoms like urinary and bladder pain, mood swings, an irregular heart rate and palpitations, as well as the constant burning sensation like I am on fire.

I want more people to be aware of Mast Cell Activation Syndome and the everyday battle that comes with it.

Mast Cell Action: What can be done to help patients like Alyssa?

MCAS is a poorly recognised condition within the NHS. It has no natural ‘home’ in any one specialism, with patients often having to see multiple doctors for various symptoms without a conclusive diagnosis. There is a need to raise awareness around mast cell disorders, listen to patient experiences, and support more research to better understand and treat the condition effectively. It is our ambition that all patients will be supported in a way that enables them to bring their condition under control and live a more normal life.

The research into MCAS is growing, particularly in the US and Germany, as is clinical recognition of the symptoms. MCAS patients can have many similar recognisable symptoms, it just takes time to take a detailed history and recognise the patterns.

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