Hi there! My name is Lindsay, and I am a Licensed Medical 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 as well. Diagnosed with CLOVES Syndrome around the age of 14, I finally didn’t 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 responsible for disfiguring parts of my body. It took time, but I now have accepted this disease and do my best to act as a role model for younger people and other individuals diagnosed with this syndrome. I’m now an avid advocate for rare diseases and member of the CLOVES Family Advisory Council.
This blog is for those individuals and their families who aren’t quite sure what to expect for their future, have qualms about their diagnosis, or simply need to be reminded that there are other people like them out there. I’d also like to use this blog to articulate to the world what the reality of living with CLOVES is like and the experiences, adversities, and strengths that go along with living with a rare syndrome. I’ve found that writing is a huge release for me during times of stress, so I’d like to share my experiences when facing obstacles that come with living with CLOVES to potentially help others in similar situations while also educating those who may not know a lot about CLOVES Syndrome or rare diseases.
With words, we heal.