Sophie's story

I just had to get used to constantly being in hospital, rather than being able to do normal teenage things.

How It Began

When I was a baby, I reacted badly to vaccines and viruses, my entire face would swell and my mum remembers occasions where my skin would turn blue. As a baby I also suffered from Colic, which caused me to develop constipation issues when I began primary school. The symptoms were so bad that I spent most of my time between the hospital and home, rather than at school. As I got older and entered High school, I began experiencing severe menstrual problems. While on my period I would lose a lot of blood, and be extremely nauseous, which caused me to spend a lot of time off school every month, and I also suffered from Ovarian cysts. 

Alongside these problems I would experience horrific migraines that I could feel in my eyes. When seen by a doctor about this, they told me that I was close to suffering a stroke. But I still had no answers about why this was happening to me. On another occasion, I began getting heart palpitations and was put onto a 24-hour ECG monitor. This revealed that I had a slight heart murmur, but again I was left with little answers about what to do. It was a lot to deal with as a teenager. As I got older, more and more strange things began to happen with my body. I still reacted the same way to viruses and even getting a cold would cause migraines, dizziness, and hives. I once had a kidney infection, and rather than making me fell better the antibiotics caused me to constantly be sick.  

Going to university is supposed to be a fun experience; instead it is where my health issues worsened when I began drinking. During my third year at university, I woke up the morning after my birthday and immediately knew something was wrong. The night before I had been out with friends, but now I was struggling to breathe. An ambulance took me to hospital, where doctors told me I was experiencing anaphylaxis.  

When in hospital with anaphylaxis, the doctors told me it was probably a one-off, and not to worry a about it.

Towards A Diagnosis

In school I was repeatedly told by doctors I had an enlarged bowel, which was why I struggled with constipation, so I spent a long time taking Movical to ease the symptoms. Because of my menstrual issues that continued throughout Sixth Form, doctors believed I had Endometriosis. Whilst everyone else was at prom, I was undergoing an operation for endometriosis. After my scary first experience with anaphylaxis, I became very anxious about it happening again, so my GP prescribed me an EPIPEN as a precaution and I was given allergy tests. Unfortunately the tests came back normal, with no clear answers as to why my body reacted that way. With that I was sent home, but my symptoms only progressively got worse. I ended up back in hospital numerous times after noticing a lot of blood whenever I went to the toilet, and the doctors eventually decided I may be dealing with Colitis. Once again though, I was not given a clear definitive answer about my condition, or how to treat it.  

Although my experience with GPs has gotten better over the last year, I continued to deal with being treated like a medical mystery when a Sigmoidoscopy showed that I did not have colitis or polyps. I also developed an eye condition called Uveitis and was referred to an eye specialist, as I could not see. Once again though, I was given no clear answer as to why this was happening, so I still suffer with it.  

After the operation, despite continuing to suffer with symptoms, various test results came back normal so doctors labelled me a ‘medical mystery.

Getting Support

During lockdown I continued to struggle with all my worsening symptoms, without ever getting satisfactory help because doctors decided I was ‘normal’. Since I was getting nowhere, I gave up trying to get help from the hospital and just went on suffering from facial swelling and bloody stools. Then I moved to a new area and registered with a new GP who finally took me seriously and I felt truly listened to. My new doctor was prepared to thoroughly investigate my symptoms and helped me so much. Last summer the heart palpitations came back, my face was always swollen and flushed, and I noticed even more blood when I went to the toilet.  

The morning after I had the COVID-19 vaccine, I woke up with a very swollen face and other generic allergic reaction symptoms. This is when I got referred to an allergy specialist for a telephone consultation. Despite only talking on the phone, the specialist was able to immediately pinpoint my symptoms and give me an answer, histamine intolerance and suspected Mast Cell Disease. Now, I follow a low histamine diet and take Cetirizine every day. I also have stronger anti-histamines and still have an EPIPEN for when I experience symptom flares. By following this treatment and altering my diet, I don’t suffer as badly as I used to. I rarely have palpitations, my face no longer swells, and my gastrointestinal issues have cleared up. I now know the triggers that will set off symptoms again. For example, when I caught COVID-19, all of my previous symptoms came back with a vengeance, until the infection passed. 

After speaking to the allergy specialist over the phone, I was so happy to have a diagnosis. I was finally being heard and not made to feel crazy!

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

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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