A rare community of support

Life with a rare disease brings so many unique challenges for every individual impacted. With CLOVES in particular, this disease manifests in every person differently so no two people diagnosed have the same symptoms. That means that not only do we have a unique experience being diagnosed with a rare disease, but we live an even more unique life because our disease impacts us in our own individual way. This means we may have different symptoms and have different treatment plans from one another.

Despite each and every one of us living such a different experience, I have felt more comradery with other individuals with CLOVES Syndrome as the years have gone by. Not only that, but I’ve also felt this strengthening connection with others in the rare disease community as a whole. What I’ve learned over time is that this rare disease community is so strong and supportive of each other. While we may have different diagnoses or even the same diagnosis but different lived experiences, we kind of get each other. We know what it’s like to live with a rare disease and the weight that carries. We may relate to each other if we’ve been in similar situations like going undiagnosed for a long period of time, fearing the unknown, or having a lack of treatment. These situations are hard, but being able to connect with other people who have gone through them too is so special.

Support really goes a long way in any situation really but especially when you’re living with a rare disease. I can speak from my own personal experience when I felt so isolated before I received an accurate diagnosis. I always felt like I was the only person in the world who was born like me, and that made me feel so alone. Once I was diagnosed with CLOVES Syndrome and connected with other families impacted by CLOVES, that isolated feeling started to dissolve, and I think that is where my healing journey began.

The rare disease community coming together to raise awareness on a shared interest leading up to and on Rare Disease Day is truly a beautiful thing. I’ve felt more and more connected to this community each year and so proud to be a part of it. We certainly don’t have it easy, but we have each other.

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