Fanfare please

Overnight my blog has had its 200,000th visitor.  Holy crap!  I had no clue when I started writing that anyone would a) be able to find it on Google or b) be remotely interested in reading it.

Although the blog covers both M.E. and Ehlers-Danlos Syndrome my traffic statistics show that most visitors are interested in histamine.  The amount of people all over the world who are suffering allergic-type symptoms yet not being found to be allergic to anything is staggering.  Yes, I get people visiting who have one tiny little hive and think it’s the end of the world (kind’ve want to slap them and tell them to quit whining 😉 ) but at the other end of the spectrum are people with really serious symptoms which massively affect their quality of life and in some cases are life-threatening.  Histamine Intolerance isn’t even recognised in the UK and Mast Cell Activation Syndrome doesn’t fair much better, which leaves sufferers totally out in the cold.

Through sheer numbers of sufferers, HIT is making inroads into the public consciousness.  This recent article written by journalist Bee Wilson, the wife of a sufferer, appeared in the Telegraph and you don’t get much more mainstream that than!   However, despite this and the fact that the first immunologist I saw later said (after I’d been to London and received my HIT diagnosis and wrote to inform him of it) that he recognises people can have low levels of DAO, HIT was never even mentioned at my appointment and still isn’t tested for on the NHS.  The medical profession, it seems, is lagging way behind the knowledge of its patients.

I attended an international Mastocytosis conference in 2013, where one of the subjects covered was “MCAD – where do we go from here?” and at the upcoming EDS UK conference in October Dr Seneviratne is speaking on mast cell/histamine disorders in Ehlers-Danlos which I hope other medical professionals attending the conference take note of.  But, again, most Consultants working in the field of immunology and allergy still don’t even recognise MCAD exists, let alone diagnose and treat it.

We are making baby steps in recognising people have issues with histamine production and mast cell activation which don’t fit previously recognised diseases like allergies and Mastocytosis, but we have a lonnnng way to go.

In the meantime we’re dependent on a few people sharing their histamine stories just so’s we don’t feel quite so alone and isolated with our weird and wacky reactions to life.  Until I found other people online with similar symptoms to me I honestly felt like I was losing my mind, and the medical profession had labelled my anaphylactic reactions to food and drugs as “panic attacks”, so I stopped going to see doctors altogether which looking back could have killed me.

“Thank you” to all all my visitors and for the lovely, knowledgeable, caring people who comment on my blog posts.  A big “thank you” too to the members of this blog’s little support group who have helped me through some tough times this year – I hope to meet some of you in person at the EDS conference in a few months time 🙂  I also follow the lives of some truly lovely people via other blogs, who I will probably never meet in person but who I already class as friends.  For diseases which are considered “rare” there sure are a lot of us about!  I had no idea when I wrote my first post on 17th April last year that it was all going to get this big, but I’m so thankful I chose to share my journey with you all – you’ve given me so much and your friendship and support have been invaluable.

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6 thoughts on “Fanfare please

  1. Niki

    How are you planning coping food wise for the conference… Would love to attend with daughter but she’s currently so reactive I think eating restaurant food all the time will be a nightmare

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    1. bertieandme Post author

      Hi Niki

      I won’t get there until afternoon Sat so will only need dinner Sat night, breakfast and lunch Sunday. I’ll just choose whatever is most low histamine on the menu. Now I have my histamine ‘bucket’ under control I find I can usually cheat without too many problems (eg. I can have the odd roll or slice of bread with yeast in etc.). I’m lucky in that I’m not as reactive food-wise as some people – as long as the food is low in histamine and not processed I’m usually OK. I know many people, like your daughter, can barely eat a thing without reacting though and it must be so incredibly hard 😦

      Jak x

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  2. Christine

    Congratulations! I’ve truly enjoyed your blog from the beginning. You do a great service to the chronic illness community.

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  3. todd

    You are so great for sharing and have given me strength. I know now that I am not alone or crazy!! FYI… Please go to PRETTYill.com and read all about Dr. Diana who is both patient and true pioneer!! Let me know what you think…
    Regarding “histamine”….I’ll have to read up on that more!! Thanks again for your blog!!

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    1. bertieandme Post author

      I’ve been a fan of Dr Diana’s work at Prettyill.com for over 3 years now Todd and have her book on Eyes & EDS on my Kindle – she’s amazing isn’t she? x

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