Sara's Story

It is only in the past year I have become aware of the mast cell issue going on in my body!

HOW IT BEGAN

My mother says my skin changed after I had malaria and amoebic dystentery aged 6. I often experienced joint pain as a child, feeling like they were on fire, but this was dismissed as growing pains. As I got older, use of my arms - for example In the gym - led to intense pain. Over the past decade I began experiencing flushing skin if I drank red wine. I also noticed that bee stings and insect bites cause me to swell excessively, and it has recently got far worse. 

I am a beekeeper, and have only ever been stung twice. But both times I swelled up hugely in my right arm and hand, even when I was stung on my other arm!  When I get an got an insect bite, regardless of where on my body it is, the same hand and arm swell.  After the second bee sting when the swelling eventually went down, I felt exhausted and ended up with heart pains so bad that I was taken to hospital. I was given a range of heart tests but although they showed my heart had suffered an 'incident', they did not conclude that there was any problem with my heart.  

I saw my GP and told him about the bee sting incident, as well as all of the other strange reactions and symptoms that I have experienced throughout my life. He told me that he had another patient with similar issues, and immediately referred me to an immunology specialist. Because of COVID-19, my consultation was over the phone; I was diagnosed with Chronic Spontaneous Urticaria and Angiodema. 

My GP was excellent when realising my symptom history, I realise I am very lucky with the care I have received.

TOWARDS A DIAGNOSIS

I have found trying to get diagnosed with MCAS difficult, often being told that MCAS does not exist. But one doctor over the past couple of years has helped me understand that my experiences and symptoms are normal in people with Mast Cell Disorders. I do not have an official diagnosis of a Mast Cell Disorder but after speaking with my immunology specialist, we are both certain that I am dealing with one.

I was prescribed anti-histamines with cimetidine, hydroxyzine, montelukast, and ketotifen, if needed. I manage on three anti-histamines a day, I also manage my energy levels and the causes of my reactions. Being self-employed helps me be able to take time when I need to just rest for the day and do nothing. 

The main struggle with getting a diagnosis for MCAS is being told by some medical professionals that is doesn’t exist.

GETTING SUPPORT

My symptoms have evolved in recent years, but I am able to manage them. I can cope with itching and hives well enough, for me the fatigue and brain fog is the hardest to deal with.  

I think there are so many people now with things like fibromyalgia, long covid, rheumatoid arthritis etc... that society is generally better able to understand that some people have long term conditions that may mean they have to take time out.  In my case, I am perfectly capable of telling people what is wrong with me and why I occasionally have to turn things down. 

I have found the support at Mast Cell Action, particularly the facebook group, very helpful.

 

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

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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