Real Life Stories: Living with Mast Cell Activation Syndrome | Finding Your Range Podcast Episode 7
12,367
Published 2021-01-31
After a lifetime of symptoms, Keeya Steel was diagnosed with mast cell activation syndrome in 2015. Soon after, in effort to cope with the disease, Keeya created Hell's Bells and Mast Cells, a blog and collection of memes raising awareness about chronic illness and disability through humour. Like many MCAS patients, Keeya also struggles with dysautonomia and EDS, completing what she calls her "three-ring circus." Keeya lives in Minneapolis, Minnesota with her two poodles, Quixote and Sancho. Keeya recently finished filming for a documentary on mast cell activation syndrome.
💙 Subscribe to my Jeannie Di Bon YouTube channel for free Hypermobility and EDS videos every week to support high-quality hypermobility videos for all! 💙
- - - - - - - - - -
🦓 Become part of The Zebra Club today! 🦓 www.thezebra.club/
- - - - - - - - - -
👉🏼Check the rest of my range of products: jeanniedibon.com/products/👈🏼
- - - - - - - - - -
📖 Read my blog for advice on Hypermobility, EDS, chronic pain and more: jeanniedibon.com/blog/
More at jeanniedibon.com/
▶︎ Instagram: www.instagram.com/jeannie_di/
▶︎ Twitter: twitter.com/jdibon
▶︎ Facebook: www.facebook.com/jeanniedb/
▶︎ All my products: jeanniedibon.com/products/
- - - - - - - - - -
I am very grateful for my fellow Zebra Philip Quigley, a musician from Leyland in Lancashire UK, who wrote the music for this video and just for this channel. Thank you. I am delighted to have my own theme tune.
- - - - - - - - - -
The information provided in this video is not designed to replace medical advice or be used as a replacement. Please ask your medical practitioner if you have particular queries on you
All Comments (21)
-
After giving up on regular doctor's because "your blood tests show no inflammation so you are fine"; a naturopath finally figured out what is going on with me. Thank you for sharing your story as I feel I have been through very similar things.
-
Thank you for sharing 💖 I feel so alone with mine, people don't realise how hard life is with MCAS. 🥺 But we must not give up and keep raising awareness 👩🏼⚖️💓
-
I'm crying right now. 😭 The online supports are so helpful.
-
Omg, your story resonates with my experience. I am 69 years old and after having dysautonamia diagnosis from my cardiologist after falling and hitting my head, he said I have MCAS. Though the allergist said he doubts I have it yet says he believes something is wrong. He is old and I believe just needs to retire. I had tonsils out as a child, allergic (hives)to bee/wasp/ mosquito stings, asthma that has been severe ( prednisone for 2 years straight, IBS, SIBO, chronic debilitating migraine, vertigo, dysautonamis with low BP 90/60 is high for me, syncope, facial flushing, my body temp is unstable, unexplained muscle pain that comes on fairly quickly and leaves fairly quickly but makes me bedridden sometimes for days. Chronic sinusitis-sometimes severe, all of these symptoms come and go at their own will. I have no control. I also have ADHD. I have hyper mobile joints with ruptures discs, hips pop out of place and have muscle spasms. Drshate patients like us. Sometimes I hide that I am a retired ICU/ oncology/director of education with 35 years of experience just to see how my symptoms list affects the doctor. They hate patients like us, though some are very very good.
-
Thank you for putting a face and giving an eloquent description of mast cell disorders! Struggling with fragrances right now. 😔
-
I can relate to you more than you can imagine! I’m in an area where there isn’t an expert in my state for MCA so no formal dx(genetics and other specialists say they believe I have it but can’t get out of state for testing) also symptoms of csf leak but dony have access to chiari/Eds expert to do spinal tap. Dietician just put me in low histamine diet and was researching and found you. It’s amazing how big of a blessing my dog has been for me!!! Training her to be my service dog 🐕🦺 has been saving grace for me! I can’t wait to see your documentary, thank you both for this video! Prayers for all with these illnesses and those who advocate! ❤️🙏✝️
-
So I came across Kiara’s blog and was relating so much. I also have PMDD on top of EDS and mast cell activation syndrome. So it really resonated with me! And the. I have been following Jeannie for some time and voila, a perfect meeting of the minds discussing our relationship with our bodies and it’s challenges. I couldn’t of wished for a better podcast! Thanks you both.
-
Great and courageous! MAY GOD HELP YOU and all the Drs who research this disorder. Keep strong 💪. Thank you for sharing your experience!
-
Very interesting Jeannie and Kiara, thank you both for taking to the time to produce this podcast. Lots ring bells, I have some new research to do 😉 xx
-
Another great one, Jeannie - Thank You!
-
Love this interview! I have three daughter's with EDS and Mast Cell Activation Syndrome and this was interesting and so encouraging.
-
Hypermobility is also related to zinc deficiency.
-
I was curious how to find the documentary when I looked it up I couldn’t find it. And the IG link on their account says the website is not found.
-
Can this affect the bladder ?I am very sensitive to histamine ,gut symptoms go wild and nose always stuffy,,low blood pressure ,sweating ,flushing ,now I started having bladder symptoms ,no bacteria found but bladder is inflamed and I urinate all the time
-
I'm sitting here with hives, and realizing I need to take my meds.. lol 😆
-
What usually comes first, mast cell activation syndrome or EDS? Can it be healed or at least halted?
-
Hang in there! Isolation is so hard.
-
What did you end up taking to get your mast cells to calm down?
-
What tests help confirm this diagnosis?
-
My mouth will not stop burning. It only stops if I fast for a number of days. My tastebuds are super inflamed.
