Did you find my site when searching for information on MCAS?
More and more people are, it seems. It’s a bastard of a condition, life-devastating and disabling in ways that are so often cruelly misunderstood, and lots of people are really desperate.
The excellent charity Mast Cell Action offers information and support and can send you a list of mast cell specialists in your area (if you’re in the UK). They also have a Facebook support group. They are a small young charity working hard to get proper recognition, treatment and research for MCAS, and they can’t do it without our help. So please consider making a donation at https://www.justgiving.com/mastcellaction.
In my blog there are posts which explain which things have helped me:
1) The various tests I had to get diagnosed at last: And Finally… It’s Mast Cell Activation Syndrome
2) Discovering Histamine Intolerance via a nutritional therapist:Getting Better: The Science Part (1),
3) My experience with the Low Histamine Diet: More about Food
The guest post Another Girl Out Of the Dark. about another severely light-sensitive person improving via an MCAS route.
Please read these before contacting me regarding MCAS/HIT. They pretty much contain all the information I can give about my experience – and sadly, with MCAS, given how individual our triggers are, what helps one person may make another person worse. Anything else useful that I find out I will post here. Always consult a properly qualified medical professional.
Good luck fellow masties, hang in there and all my good wishes. Anna
Useful Links for Light Sensitivity
People with various degrees of light sensitivity find their way to this site from all over the world. Here are some links which may be useful, in response to the many questions I’ve been asked.
https://lightaware.org/ A growing number of people worldwide experience severe and painful reactions to new forms of lighting like CFLs and LEDs. This charity aims to raise awareness and combat the social exclusion of light-sensitive and light-disabled people.
https://www.lupusuk.org.uk/eclipse/ The Eclipse group is part of Lupus UK, but helps people with severe light sensitivity whatever the underlying cause. They provide an excellent product list.
Thick black wool felt is the most light-protective material. I got mine from www.anglotechnicaltextiles.co.uk. Ask for a sample first – it smells a bit.
This scientific paper describes a case in Sweden, which began with a burning face when using a computer and progressed to full-blown extreme cutaneous light sensitivity all over, even through clothing. Olle Johansson Doc