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Newsletter: Spring 2019
Welcome to our Spring newsletter full of exciting news about upcoming webinars, mast cell research initiatives and fresh new blog posts.
Wishing you a warm, fresh, reaction-free spring!
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Webinar: Mast Cell Disorders - More Than Just Hives
Join Dr. Moshe Ben-Shoshan, Pediatric Allergy and Immunology Specialist, as he presents his most recent research on mast cell disorders and discusses his new Mastocytosis Registry.
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Read more: Webinar: Mast Cell Disorders - More Than Just Hives
A Story of Workplace Accommodation
One of the things I was most afraid of when I was first diagnosed with Mastocytosis was how my life would change. I worried if I would be able to live on my own, if my life expectancy and quality of life would decrease and whether I would be able to work and support myself.
This blog post is about an understanding employer who made a significant impact in my life.
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I Walk Circles Around the Hospital
This week's guest post is courtesy of Hell's Bells and Mast Cells. The article discusses how walking (in the safest place possible) is helping to restore muscles that were weakened by long-term use of prednisone.
It is an informative, humourous perspective about getting back into an exercise routine.
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Food Restrictions May Lead to Further Sensitivity
Guest Post from Wendy Busse, Registered Dietitian. As a registered dietitian, my specialty is helping clients on a limited diet expand their intake and enjoy eating again.
In this article, we will discuss Tips to Prevent a Downward Spiral and Tips if Your Diet is Already Restricted.
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Read more: Food Restrictions May Lead to Further Sensitivity
Limbo Land of the Undiagnosed
According to my diagnostic tests, I should be healthy. So why do I take 12 pills a day just to eat and carry around two Epi-pens?
Welcome to the limbo land of those of us who have mast cell disease but are technically undiagnosed.
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A Spouse's Perspective
It takes time to learn how to live with Mastocytosis, long-term, and in this article, I discuss how my husband and I deal with acute mast cell attacks in our home.
Communication, we have found, is essential.
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Watch: Minimizing Food Fears + Frustrations Webinar
The video recording is now available for the Minimizing Food Fears + Frustrations webinar held on March 6, 2019.
Watch as Wendy Busse describes eight helpful tips for managing food sensitivity. Also included in this article is a brochure outlining these eight tips and the questions and answers asked during the webinar. We hope you enjoy!
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Read more: Watch: Minimizing Food Fears + Frustrations Webinar
A Day in the Life: Living with Mast Cell Activation
This week's blog comes from Michelle Dellene over at mastcelldisease.com. Michelle writes a very relatable blog about her journey with mast cell activation.
Here is the most recent post from her "A Day in the Life" series, which shares an inspirational message for all of us. Enjoy!
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Read more: A Day in the Life: Living with Mast Cell Activation
A Patient Perspective: Kathleen
My name is Kathleen and I was diagnosed with Systemic Mastocytosis nearly 18 years ago. I would like to share with you the details of my diagnosis, my treatment plan and the ongoing management of this rare disease. Today my Mastocytosis is stable, but that hasn't always been the case.
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