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Rare Disease Day 🦓💪🏼

Recently, I was diagnosed with hEDS in December by Dr. Aubrey Milunsky in Cambridge — and I feel deeply validated. So many lifelong struggles, alongside dysautonomia, MCAS, autoimmune challenges, and living with an ileostomy, finally connect.

I’m incredibly grateful to Amanda McTaggart — my EDS guru — who first recognized this in me back in 2017. She lives with a profoundly complex EDS diagnosis and faces extraordinary challenges with unwavering resilience. I am truly in awe of her. I hope to be back in Ireland 🇮🇪 sometime soon, my friend.

In 2026, I move forward informed and supported. I’ll be sharing more about this diagnosis and how it connects to the broader picture of my health. Knowledge is powerful. There is strength in being seen. Grateful for the community that helps us connect the dots as we celebrate Rare Disease Day.

#RareDiseaseDay #EDS #zebrastrong

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Receiving a diagnosis like hypermobile Ehlers-Danlos Syndrome (hEDS) can feel like piecing together a complex puzzle of lifelong health struggles. For many, including myself, conditions such as dysautonomia and MCAS add layers of challenges that make daily life unpredictable. I’ve found that sharing experiences with others facing similar hurdles not only helps in managing symptoms but also empowers us with invaluable emotional support. The strength of the EDS community, symbolized by the #zebrastrong spirit, has been instrumental in my journey toward understanding and acceptance. Zebras represent the rare diagnosis that many doctors might overlook, highlighting the importance of awareness on Rare Disease Day every year. Connecting with mentors and advocates who live with complex EDS conditions has provided guidance and hope that resilience is possible despite the odds. In managing hEDS and related conditions, I’ve learned that knowledge truly is power. Educating oneself and healthcare providers about the interconnected aspects of these disorders can lead to more effective management plans tailored to individual needs. It's comforting to know that as we move forward into the future, with advancements in medical understanding and community support, living with such rare diseases can improve in quality and outlook. Embracing this diagnosis means also embracing self-care practices, listening to one's body, and celebrating small victories. The journey is deeply personal, yet never solitary, thanks to the communities that rally around awareness days, share resources, and foster a sense of belonging. Together, by spreading awareness and advocating for better research and care, we turn what once felt isolating into a shared human experience filled with hope and strength.

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