As the current coordinator for the PNW Chapter of The Mastocytosis Society covering the greater Pacific Northwestern region of the US plus a few neighboring Canadians, I’ve been eager to help educate both patients and doctors as much as possible to this collection of diseases involving mast cell activation that goes so rarely diagnosed. Alas we aren’t in contention for a full scale TMS medical conference for another year at least, so I decided to offer a regional “Introduction to MCAD” meeting this past June to tide us over. I invited local doctors as well as patients in hopes of “infecting” a few more with this information, and succeeded in getting three local doctors to attend for the win! (Thank you guys SO much for coming!)
That’s three more doctors in the Portland, Oregon area who now have a better idea about when to suspect MCAD (any type), how to diagnose it (tricky, may need to consult specialists), and what to do about it (as individual as fingerprints with some common themes). We DEEPLY appreciate their generously taking personal time to learn with us to help shorten the diagnostic journey for many!
Of course I also threw in a little information on when to suspect the commonly comorbid Ehlers-Danlos Syndrome just to really round things out for them and everyone. I’m truly hard pressed to find any patients without signs of both – it’s just that folks usually cling to their first diagnosis and proceed to ascribe all other issues
to it (when you have a masto “hammer”, everything’s a masto “nail” and vice versa), or understandably can’t deal with “yet another rare systemic disorder”.
I don’t blame them, it’s a lot to take in. But there’s huge benefit to be gained from treating both sides of the equation – biomechanical and biochemical. Never mind the myriad other issues that can also plague us, adding to this incredible disease burden. (You’ll see a few more in the slides – I’ve grown “The Trifecta” to a “Hexafecta” I’m afraid.) And no, not everyone will have both/all, of course. But denial is not a river in Egypt either (smile).
I was lucky to also procure a gracious and savvy speaker on Nutrition for MCAD Patients, dietician Wendy Busse MSc, RD from Red Deer Alberta Canada who generously came down to join me and address how best to maintain nutrition with so many food intolerances and reactions. (No small feat!)
That said, she provided some wonderful insight into how not to always blame an innocent food without considering many other factors that may have contributed to our reaction first. (Emotional state while eating, the food’s source, preparation, brand, species, packaging, and more.) E.g., don’t write off all apples just because you reacted to one particular variety. Try other varieties, and/or sources (farmer’s market, organic, vs waxed shelf-stable in a commercial retail shop). Raw vs cooked. Try not eating when stressed. And consider the growing conditions. You get the idea.
I’m happy to share that Wendy also successfully recorded at least my talk (the camera pooped out on hers alas), and has provided a copy of my talk on video which is posted on YouTube here now. I’m offering my slides in both PowerPoint format and PDF for you to read along side since the video isn’t the highest quality. (Hey, it’s free! Though please do not use the material without permission first thanks. Just ask me first, or give proper credit, thank you.) At least she got the audio which counts for a lot and hopefully you can put the two together successfully and glean some good insight.
I admit to hijacking the room and forcing them to take a short guided tour of my (this very) website at the start (since the venue had internet access) only because I’m exhausted from sharing my MCAD Resources page with newer people, only to find they can’t even be bothered to go look and keep asking me for material that I have posted there.
It is seriously loaded with some of the best and latest information and links to other great sources for drilling down further on all aspects of MCAD. I’m quickly concluding we’re an awfully busy but sometimes lazy bunch these days, thanks in large part to television and social media that usually serve up information for us without us even needing to click a link. And I know, some folks prefer more graphics and videos than I’m offering. (I’m working on it.)
So I promise to work on my video and speaking skills if you’ll promise to read more, okay? And perhaps we’ll meet in the middle. Meanwhile enjoy this free offering in the comfort of your home in your jammies unlike the hardy folks who schlepped in to the live meeting which I deeply appreciate. I realize not all could make it that wanted, and that’s why we recorded it.
Cheers and Happy Fourth of July to my US fans,
Jan July 4, 2015
PS I would be remiss if I did not also acknowledge and thank Todd Mortensen from Nutricia North America for coming and bringing samples of their Neocate line of products to our meeting also. Nutricia’s Neocate line is one of the few some of our patients can tolerate thanks to the elemental nature of their formulas. Local Pacific Northwest USA region patients (WA, OR, ID) can contact regional sales rep Todd Mortensen at 1-866-538-6225 for samples to try if interested.