About

Hi there! My name is Lindsay, and I am a social worker at a hospital in Pittsburgh. As a child, I was born with an unknown disease that took years to identify. Not only does this syndrome bring on medical issues, but it also brings the burden of emotional and mental challenges. Diagnosed with CLOVES Syndrome around the age of 14, I finally started to not feel like the only person in the world living with a rare diagnosis. Meeting other people who had the same diagnosis as me helped tremendously in coping with this difficult experience.

By the time I got to college, I finally started to come to terms with this rare syndrome that has caused medical complications and physical differences all my life. It took time, but I now feel more comfortable in my own skin and have become more vocal about sharing my rare disease experience. I’ve learned how valuable it is to connect with others in the CLOVES Syndrome and rare disease community. I now try my best to advocate for CLOVES and rare diseases and am a member of the CLOVES Family Advisory Council within the CLOVES Syndrome Community.

This blog is for individuals with CLOVES and their loved ones who might be looking for some connection to the CLOVES community or a reminder that there are other people out there with this diagnosis despite us all being impacted in unique ways. It’s for those who might not know about CLOVES or rare diseases and would like to learn more. It’s for anyone with some kind of connection to this community at all or not–really, it’s for everyone. Whoever you are, thank you for being here.

I’d like to use this blog to share my experiences and the reality of living with CLOVES and the adversities and strengths that go along with it. I’ve found that writing is a huge release for me during times of stress, so why not use that to connect with others at the same time?

With words, we heal.

Please note: The content of this blog is all personal experience and is not intended to provide advice, whether medical or otherwise.