Abi's Story

Why did you decide to donate to Mast Cell Action?

I have Mast Cell Activation Syndrome. It mainly affects my gut, so amongst other symptoms, I feel sick most of the time and have to stick to my 19 safe foods. I donated to Mast Cell Action because I like that they focus on raising the awareness of Mast Cell Activation Syndrome with the medical community and beyond.

What would you tell others about Mast Cell Action?

That they are a group of dedicated people really trying to help the MCAS community. They have an active facebook group with lots of people with lots of experience of living with this very challenging condition. They have excellent infographics which help to explain the complexity of this condition. They are the ones spreading the word to doctors and other healthcare professionals, they also organise supportive webinars for the MCAS community.

What do you believe would most transform life for people living with MCAS?

For MCAS to be well understood and accepted by doctors. To receive a leaflet when you get diagnosed. To get treatment and multidisciplinary support from the NHS, and a care coordinator who could link all your doctors, prescriptions, tests etc etc. it is a full-time job, and it often feels like too much to deal with when you are ill.

To manage expectations from the outset, I know this is hard because everyone’s experience can vary, but I blamed myself for many years. It is only ten years in that I can accept that I’m not doing anything wrong. I think acceptance is the holy grail… it is something that is very hard to achieve without the understanding and support of those around you, including doctors.

Also to be able to reliably get the medication that we need, in the same brands… if that is not achievable, then a system which lets us know what will be available beyond the next box. I would be so much more stable if I didn’t have to keep swapping brands. It has made me so sick over the last couple of years.

Also, obviously… the magic pill…. To take it all away…

What message would you like to share with the MCAS community?

Keep going! Trust your body, listen to its reactions and keep a diary so that you can work out what your triggers are.

What message would you like to share with the wider community?

Sometimes, when people look healthy on the outside, they can still be very unwell. If in doubt, ask questions… I never mind answering questions, and it shows that people care.

Is there anything else you would like to tell us?

I think we need to get the narrative of living with a chronic illness out there. Not the magic ending of recovery, but living with symptoms and challenges every day, and trying to get the best out of your life.