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MAST CELL ACTIVATION SYNDROME - My story.

I wanted to share my journey over the years with my autoimmune disease. I hope this might help some others who are unaware of this condition and help a few people who continually don’t get answers for their symptoms (if relevant of course!).

For years, I was dismissed that being in pain, feeling unwell and having no energy was ‘in my head’ and told to ‘just get on with it’ - by many doctors.

Well back in I think 2017 I was diagnosed with Mast Cell Activation Syndrome (MCAS), (along with Ehlers Danlos-Syndrome (EDS) and Postural Tachycardia Syndrome (POTS)).

MCAS is an autoimmune disease that can affect every system in the body. EDS is a tissue connectivity disorder which in my case mainly affects my joints but also my organs (bowel, heart and stomach mainly for me). POTS is a common bi-product of EDS. A lot of people I know that have MCAS have all 3 of these conditions.

I’m going to focus mainly on MCAS as it’s the least known. With it you can be absolutely fine one minute and the next in hospital for some new issue that hasn’t cropped up before.

It is something that you will live with forever and when under control is managed really well and you do leave a really normal life. However understanding of the condition is key when treating the various systems that get affected, whether it’s the bladder, bowel, heart, stomach, joints etc. So this isn’t just something that needs to be understood by the individual specialist that treats the condition, it also needs to be better understood in each individual field and specialty.

For me, this latest flare up however has lasted 6 months which has meant 6 months off work - so it has been a particularly debilitating episode I’ll admit!

Due to these conditions I have had surgery, procedures and treatments on my bladder, uterus, nerves, multiple joints, heart, colon, stomach…the list goes on.

MCAS is a relatively newly discovered disease and there is more and more treatment coming out as we find out more. However I believe it is only just starting to be recognised within the NHS. As yet, the only treatment I have known of people to get is through private consultants who specialise in the field. Where these consultants are so few and far between, the waitlists to see these consultants is so long or closed to new patients, so many people do not get treatment through the NHS and often are never referred to the right people to get the treatment.

Secondary to that, and this is not the fault of any individual doctor, but where this disease is not very widely known among doctors in the Uk (it is much better in the US), often people are dismissed at the start when at their GP. Often symptoms are multi systemic and are often dismissed due to do how ridiculous it can all sound. Many times I was told it was ‘just anxiety’ 🙄.

I’ll give you an example at the start of my most recent flare up (which started around May/June). I couldn’t eat, if I did I vomited. When I didn’t vomit, my bowel would have the most excruciating pain landing me in a&e several times needing morphine. My vision was blurred. I had brain fog. Migraines. All of my joints hurt to the point that going for a walk caused too much pain. I was having an asthma attack at least once a day. I kept having random anaphylactic attacks to nothing and sometimes to triggers. Dizzy spells. Nausea. No appetite. Weight loss. I felt so unwell I couldn’t even get out of bed at some points. It felt like every food and medication I took I would react to. Honestly - to my GP I must have sounded like a complete hypochondriac! I managed to get back to see my specialist and after 6 weeks of new medication 80% of these symptoms had subsided. Without my specialist I honestly don’t know what would have happened. However, even I at the time thought, I can’t be MCAS causing all of these problems. I’ve never been this bad! Turns out it was. And I’ve had years with the condition and still didn’t know was what was going on.

MCAS will often present as many other things, no set presentation of symptoms that align with any one condition but tests will nearly always come back negative for any of the usual suspects. Bowel pain? Looks normal - probably isn’t.

For example, take the pain in my bowel recently. Colonoscopy revealed everything was normal - however it was far from it. I didn’t even want to eat through the fear I would get the unbearable pain. Thankfully my specialist requested the gastroenterologist to order specific staining of the biopsies which showed 10x the amount of mast cells that are expected to be present in the bowel. This essentially meant that the level of inflammation (which is extremely high) is not visible to the eye. Only microscopic, but nevertheless just as impactful.

Studies are now showing that a lot of people diagnosed with IBS actually are also showing high levels of mast cells when biopsied and treatment is available to help this through mast cell stabilisers (Ketotifen and sodium cromoglicate are a few that are being used at the moment).

https://journals.lww.com/ajg/abstract/2019/10001/1194_small_intestinal_bacterial_overgrowth_is.1194.aspx

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5225338/

This is one example of many in which how this affects different parts of the body. I’ve had 4 surgeries this year alone with another due in January 🤯.

Another example is the link between the bladder and mast cells.

https://pubmed.ncbi.nlm.nih.gov/8284844/

The other aspect/more extreme end of the disease is random anaphylaxis. This is different to your standard anaphylaxis from a known or unknown trigger or substance. This could be from a allergic trigger or a response to simply something in the body, a smell, in extreme cases high levels of stress can cause this type of reaction. So this can often be random, unexpected and impossible to avoid.

https://pubmed.ncbi.nlm.nih.gov/25841551/

The last and equally impactful bi-product of this is the toll it takes on your mental health. Every time you seem to crack on with your life, something else rears it’s ugly head. For me, I am an incredibly social and independent person stuck in a dependant body. So many of us can feel trapped and also a burden to those around us. So if someone is struggling from a chronic or long term illness, try to keep up the empathy even if for you it’s starting to seem draining that someone is ill…again. Trust me, the person that is poorly does not want to be either.

That aside, you can also have very real neurological symptoms due to the high presence of mast cells in the brain. So this can also physically upset the brain itself.

If you’ve made it this far reading this then thank you!

I share my story to try to share information on the condition so that even if one person goes ‘oh that sounds like me’ they can start to get a start in looking in to the right treatment.

It is important to note that MCAS is something that you’d look into after more usual diagnosis have been ruled out.

I’d also like to ask, instead of sending a Christmas card or buying a gift - if you are able to donate even a small amount to Mast Cell Action to help others gain access to resources I would hugely appreciate it.

Thanks for reading 💖💖