A blog by Joy Mason - Why International Mast Cell Disease Awareness Month Matters

International Mast Cell Disease Awareness Month is special to me because I have MCAS and have 2 children with MCAS. I have spent the last decade having to explain to people what MCAS is and how it impacts each of our lives. I can’t even begin to imagine a world where people know about MCAS and appreciate the restrictions it often brings, helping us to make the changes that keep us safe. If awareness month helps to shine a light on MCAS, this will help more people to understand which, I hope, will help the world to improve the way it accepts us and also makes adjustments to support us.

Over the years, we have not only explained MCAS to our friends and family, but also to doctors and other health professionals. I have been to medical appointments where doctors have googled MCAS to understand more. This just doesn’t feel right – there is information out there, and if we can share this during awareness month and equip health professionals with the knowledge that will allow them to better support us, this will be life-changing for so many people.

One of the most challenging aspects of living with MCAS is the unpredictability. A good day can turn into a bad one without warning, triggered by something as simple as a change in weather, a new perfume, or even certain foods. This unpredictability makes planning anything difficult, and it can be isolating. Having to constantly explain why we can’t attend an event or why we need special accommodations can be exhausting. Awareness month provides an opportunity to educate the public on these realities, fostering empathy and understanding.

In addition, raising awareness about MCAS can lead to better research funding and more effective treatments. Currently, the options for managing MCAS are limited and often involve a lot of trial and error. Increased awareness could drive scientific advancements that make living with MCAS more manageable and improve the quality of life for those affected. It’s not just about explaining what MCAS is, but about advocating for a future where our condition is better understood and treated.

The support network that is emerging around Awareness Month is also incredibly valuable. Connecting with other families and individuals who understand the daily struggles of MCAS has been a source of strength and comfort. Sharing experiences, tips, and encouragement with others who truly get it helps us feel less alone in this journey. The sense of community built through these connections can be empowering and uplifting.

As a parent, it is particularly heart-wrenching to watch my children navigate a world that isn’t always accommodating or understanding of their needs. Every parent wants their children to thrive, and part of that is ensuring they are accepted and supported. International Mast Cell Disease Awareness Month is a step towards creating a more inclusive environment where my children, and others like them, can feel understood and valued.

International Mast Cell Disease Awareness Month is more than just a time to share information; it’s a beacon of hope. It represents the possibility of a better future where MCAS is widely recognised, properly managed, and compassionately accommodated. It’s a call to action for more education, better healthcare, and stronger community support. For my family and countless others, it’s a chance to make a meaningful difference in our daily lives and in the world at large.