Suzie's Story

I want other people with MCAS to know that we don’t have to be beaten by it; try not to mourn what you think your life could or should have been. By opening your eyes and letting yourself see the good, you can realise not only how much life still has to offer you, but how much you have to offer too

HOW IT BEGAN

After suffering from a major anaphylactic shock in a restaurant when mistakenly served a curry which contained peanut back in 2016, I began experiencing extreme fatigue and blinding pain with migraines for a few months. Sometime later, whilst travelling back from a song writing retreat in Andalusia, my legs swelled up like balloons and half of my entire body became so numb that I could barely walk. A few hours later this escalated to severe pain and rashes all over my body, which then turned into anaphylaxis, and I ended up in a resuscitation ward.  

These symptoms persisted, but since then I’ve also dealt with other debilitating symptoms such as urticaria and pruritus; delayed wound healing and eczema; memory loss, dizziness, and brain fog; swelling of my feet, hands, mouth and throat; abdominal pain and vomiting; recurring kidney, chest, and urine infections; bleeding gums, mouth sores, and reflux. Alongside all of that I experience idiopathic allergic reactions, as well as random reactions to certain foods one week, which I will be totally fine with the next. 

TOWARDS A DIAGNOSIS

I was diagnosed in St Marys hospital London in January 2020 by Professor Senerviratne, after an exhausting and traumatic four years of various appointments with many different doctors and specialists. Although currently on medications that have helped me to feel a lot better than before, I’m still seeing other specialists due to issues caused by MCAS and Graves’ disease. Over the last seven years I have been diagnosed with allergies to Quorn, dairy, wheat, house dust, and mould alongside my pre-existing peanut allergy. However, most of my allergy triggers are unknown and can change on a weekly basis. In total I have seen around 15 different consultants and medical professionals for my symptoms, including several neurologists as well as gastroenterologists, immunologists, dermatologists, endocrinologists, trichologist, urologists, radiologist, gynaecologist, ophthalmologist and optometrists, Psychologist, and Haematologist. My journey to diagnosis consisted of an array of allergy, blood, and urine tests which ultimately came back positive for MCAS, but have also led to the discovery of a vitamin B12 deficiency. 

Most of the medical professionals I saw, whether on the NHS or privately, either implied that it was all in my head or dismissed me and referred me elsewhere. Spending so many years unaware of what was really going on felt like torture and I doubted whether I would ever find a professional who would help and support me. This had a huge impact on my family too because they often worried for my safety as they watched me become bed bound and my symptoms deteriorate. Although my journey towards diagnosis was turbulent, it has also been a journey to self-acceptance and the realisation that I am capable of surviving and adapting to the challenges I face. 

Being made to feel like my experiences weren’t real and I like I was the problem was the most mentally challenging aspect of my journey.

GETTING SUPPORT

Whilst still under the care of consultants and specialists, my symptoms are manged by medications such as Sodium Cromoglicate, Propylthiouracil, Montelukast, antihistamines, painkillers, Vitamin B12 injections, and Epi pens.  Although early on in my journey I became distanced from my friends, due to missing out on spending time with them, group chats and social media has helped me to reconnect with them and realise we all care for each other. These days I am able to work from home and although I struggle to leave my bed or the sofa on bad days, and making food for myself or driving feels impossible, on my good days I can go for walks and see my friends.   When it comes to healthcare, I feel that the NHS are particularly far behind in their knowledge about MCAS, and there are so many divisive opinions about its existence, as well as how to diagnose or treat it. My experiences have left me with anxiety about the care I receive in hospital, because I’m worried about the limited understanding they have of this complex condition. Education about MCAS is desperately needed not only to show people how debilitating the condition is, but to make people more aware of our needs.

Adapt to what your life can be. You can love life again you just need to be open to it.