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I've been dealing with Mast cell Activation (MCAS) for 3 years now. It causes my Mast Cells to to go haywire, releasing chemical mediators inappropriately. This can be from food, medication, perfumes, sometimes there is no clear trigger. This causes my body to respond as though I'm allergic to everything. I'm down to 5 'safe' foods and even they make me react sometimes. It affects my GI tract, lungs, skin and brain, my whole body. I have a constant numb face and severe pain behind my eyes, I get rashes, severely fatigued, pain all over my body, making it difficult to sleep, Anaphylaxis plus many more symptoms. Im unable to take any pain killers as I've become intolerant to them all. If I eat anything other than my safe foods I go into Anaphylaxis.
I've had Crohn's Disease for 34 years and due to MCAS Ive become intolerant or all my Crohn's meds. This has resulted in many flare ups which caused so much lasting damage that I've had to have most of my colon removed and part of my small bowel. I ended up in ICU after my operation due to my body becoming infected. 6 weeks before this I was in hospital with sepsis due to a virus that attacked my whole body. I believe MCAS is slowly killing me and I need help. I've visited a private MCAS specialist but the NHS won't prescribe what she's suggested, she's now not offering any follow up. At the moment I'm spending over £300 a month just on medication. £300 on meat that I have to buy flash frozen from Ireland as well as organic and gluten free food . My symptoms are evolving and I need see a specialist that deals with Crohn's Disease and MCAS, any that do in this country are booked up and not taking anymore patients. I may need to travel abroad to see someone. I've been told by my Crohn's specialist that if I get any more disease in the small amount of bowel that's left then I will have to be tube fed. So far we can't find any Crohn's meds I can tolerate. I'm looking for donations to help with finding and seeing someone who can help me with my complexed medical problems whether it's in this country or abroad, with follow up appointments. I would be so grateful if you could donate a small amount but I understand it's a difficult time for a lot of people, so could you please share, share, share. Thank for reading my story. Abi.



