Hi everyone! I hope your mast cells have been staying calm all week, giving you a break from the mast cell madness we all face each day. Here’s a round up of this week’s posts and a few really important things I wanted to share with you. Scroll down to “On a side note..” for that!
I dug into the genetics side of things and learned that Dr. Molderings, a leading researcher in mast cell disease who did the Bonn study which found mutations all around the KIT D816V gene (the one frequently seen in mastocytosis), wrote a fascinating article about how epigenetics and STRESS might play a role in triggering our disease. It could explain why so many of us from the same family end up with mast cell disorders.
I also investigated the somewhat controversial topic of MCAD and getting vaccines, particularly the flu shot. I even polled my favorite Facebook group and found that the majority of us don’t get the shot. I’m one of them.
This one is really good. Dr. Molderings recently published an article detailing how to address pain management in mastocytosis and mast cell activation syndrome patients. Definitely a must-read.
I opened up about my own struggle with keeping my stress levels in check and how my short time on social media was already causing me grief and triggering my mast cells. I had my first degranulation event in a long time after being locked out of Facebook – again – for reasons that still aren’t quite clear to me. More on that in a minute..
I began my new series on MCAD & Food, which is a topic that needs to be explored in depth. We all struggle with food it seems and maneuvering the complexities of how to handle this aspect of mast cell disease is difficult for many of us, myself included.
Finally, I researched the topic of rheumatoid arthritis after noticing a fair amount of patients saying they had been dx’d with it alongside their mast cell disease. I knew it was a coexisting condition but I didn’t know that there is a direct connection between mast cell activity and RA. I understand it better now and hopefully you will, too.
So what’s next?
This week I’ll be getting back into my MCAD & Food series and also my Never Bet Against Occam, The MCAD “Bible” In Review series that I started this time last year. In my next post I’ll be discussing the chapter on Urinary Issues, and things like UTIs and bladder pain, which many of us suffer from. Don’t miss it!
I’m also going to be doing a post on EDS or Ehler-Danlos syndrome since that’s something many of us with MCAS have. I think it might run in my family, too, but I’m not sure I fit the profile for it.
I’m also dedicating a post this week to Jennifer Brea’s new documentary, Unrest, which is about her struggle with Chronic Fatigue Syndrome (ME/CFS). I thought I knew a lot about this disorder but she really opened my eyes up to the “Millions Missing”. It’s a definite must-see film but be forewarned, it can be very triggering. It took me 3 days to get to the end but it was worth it!
On a side note..
You may notice that I’ve changed the link to the Mast Cell Disease (MCAS & Mastocytosis) FB Support Group to go to the one ran by Cathy Scofield instead of the new one I had created a couple of weeks ago. I decided after the last round of anxiety brought on by being locked out of Facebook (still not sure why except I logged in from three different devices without logging out or verifying them all) that it was just too triggering for me to try to run this website, my other blog, my incessant twitterings and also a community forum. Especially if I don’t know if I can log into it without having to go through a security check every few days! 🙁
She has a great, really active MCAD forum for us already going with lots of great advice and she was thrilled that I was sending you, my dear readers, her way for support. So check it out! I’ll be archiving and then deleting my forums over the next week or so in order to focus on what I do best, which is writing here and over at my (even more) personal blog, Life In The Mast Lane.
Oh, and my twitterings, of course! I am on a mission there so I’ve been making a lot of #mastcelldisease PSA ads to post and people seem to like them. Here are a few from this week:
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Finally, thank you SO MUCH for being here. You make my day and give me a reason to keep writing and researching and bringing more #mastcelldiseaseawareness. It feels good to know I’m not alone in this madness and I want you to know you aren’t, either.
Remember, we’re ALL in this mast cell craziness together!