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Mast cell Disorder Child's face rash

Mast Cell Activation Disorder – “Making Friends?”

Mast Cell Activation Disorder   – Update

I am just feeling the effects of my mast cells going beserk. Under arm sweating, fingers tingling, scalp “lifting” mouth swollen, ears burning, throat closing face going pink and “crawling”, brain fog and anxiety and that’s just my head! Wow! Oops now I feel my skin lift, go red and itch like crazy and I can only be “glad” that this time, at least it is not my throat closing so that I am choking.  A small mercy.

Welcome to my world.

 

Mast Cell Activation Disorder

is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks.  Here is a photo – well so I think as I didn’t take it ( LOL!). Here is also a link to some information on Wikipedia.   

Mast Cell Activation disorder

 

My Condition Update

I used to live with this on a daily basis so I am very thankful that I do not have these “attacks ” very often now. I do know that a lot of you good people out there have to deal with this everyday and I feel for you.

If you read my About Su page you will see that I was diagnosed with Histamine Intolerance and then Mast Cell Activation Disorder  in 2009 confirmed later by my  doctor. I also see a brilliant skin specialist regularly to check my condition.

I realised in 2009  that I had always had times where I had unexplained symptoms. Now since 2009,  I have become expert in my symptoms and managing them – well , most of the time anyway! But it still sucks! I do feel for anyone of you who goes through it on a a daily basis.

I now feel so much better and I am now living well again and travelling extensively. I have so much energy and I run and exercise on a daily basis.  My hair is so much thicker, my body works well and my skin is great.  It has taken time and effort but it has been worth it.

Cautiously I say now that I am “lucky” that my condition came to light and that I was given this opportunity to sort my health out in such a positive way. You might say I have made friends with my condition and I am, by and large, at peace with it.  Never ever thought I would say this but it has helped me (forced me) to get really well!

Thank you to so many people who are continually writing in about my diet. I feel privileged that you continue to come and ask while I have not been present on my website.

Some of you have asked to know how I did it I promise I will share it all soon. I followed a very strict diet under the guidance of Dr Fuhrman and I take no tablets whatsoever.  Yes,  No Antihistamines.

My very dear friend ,Yasmina, who was diagnosed at the same time and who set off with me on the path to get to grips with our condition decided to research it big time.  . Please See her website for further info.   Sadly Yasmina passed away recently from cancer but her work is her legacy.

I wish you well on your health journey.

Mast cell Activation Disorder

Su

 

 

 

 

 

 

 

Skin Writing - Ariana Page Russell

Skin Writing……

“Skin Writing” is one of my more interesting symptoms. First and foremost, please take a look at Ariana Page Russell’s beautiful art work here on her website.  Please also see her website about skin writing entitled  Skin To Me  or Skintome. for more detailed information and advice about this condition.  Ariana is the expert. She has also made her skin condition into a work of art. On her website, Ariana says she uses “her own hypersensitive flesh to illustrate the ways we expose, express, adorn and articulate ourselves”.  Ariana is an artist, a creativity coach, and has founded the Skintome movement. “She has taken her skin condition dermatographia and used it as a means of inspiration, connectivity, and purpose”. I love her work. Fabulous idea! Read more

Histamine Intolerance and Diet - The Reluctant Raw Foodist

Histamine Intolerance and Diet

Histamine Intolerance! Never heard of it when I was growing up and now it’s all the rage! I was first diagnosed with this condition in 2009 as well as Histaminosis, Mast Cell Activation Syndrome or Disorder and Reactive Arthritis. I have not had the test for Mastocytosis. I didn’t see any point as I react adversely to most prescribed medication that  I have tried in the past. I had already realised that  I was going to have to make a big shot at changing my condition with diet and lifestyle changes. Back in 2009, I was terrified that I was going to be living the rest of my life in a bubble……

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No poo .. No problem! The Reluctant Raw Foodist

No Poo… No Problem!

No Poo
Yes…I have not used shampoo since Christmas when I had my hair shaved off by a very unhappy hairdresser (she didn’t want to do it) as I discovered that firstly, my hair had gone white under the hair dye and, secondly, every part of my face that my dyed hair touched was burning. After my last hair dying (dyeing misspelt at the time but probably near the mark as it was killing my hair!) session at the hairdressers I actually wedged my head in my medical adviser’s consulting room sink trying desperately to get rid of the burning pain! My hair regularly used to fall out in clumps and I developed big bald patches where my scalp shone through. Read more