A fear of the unknown is common among many, especially those living with any kind of disease. Not knowing what lies in your future medically, socially, emotionally, and/or mentally can be incredibly unsettling. Back before CLOVES was even discovered, most people with this syndrome were misdiagnosed as children, if doctors could pinpoint a diagnosis at all. We were never quite given a positive answer, as most doctors could only assume we had a disease since our symptoms were so rare. It kind of felt like they were just trying to find the disease that fit most of our symptoms. For many of us, Proteus Syndrome was our diagnosis. But all my life growing up, and as for many other people, my medical team was still constantly looking for a more accurate diagnosis so as to find treatment for this rare disease.
When CLOVES was discovered, so many questions finally received their answers. Researchers and doctors could finally investigate the cause of this syndrome and any possible treatments or procedures. Not only that, but it created a CLOVES Syndrome Community. Knowing that there are others out there like you can relieve so much weight off your shoulders. Being able to meet people who have gone through similar hardships, share your experiences, and get advice from others made living life with this disease a little easier. Getting the word out there about the discovery of CLOVES created such a strong community of families that do so much to support each other during difficult times. Awareness does this.
This CLOVES Syndrome Awareness Day, I want people to know why it’s so important for the world to know what this disease is. Taking a moment to learn about it and attempt to understand the experiences CLOVES individuals go through can do wonders for those diagnosed. We aren’t some odd people that enjoy getting constantly stared at. We are human beings. We don’t deserve to be emotionally broken down by people who don’t understand our disease, people who choose to make fun of us because they haven’t seen others like us before. Is that what you’re supposed to do when you see someone different than you? Laugh at them? That’s not how anybody should be treated. That’s not how the world should be.
It’s unfortunate that some people feel they have the right to emotionally strip down other individuals to the point where they feel like their disease is the only thing that defines them. We are not our disease; it is just a part of us. Never should we feel that our character can be judged by something we were born with, something that doesn’t define us at all.
I bring up difficult experiences like this because there is something that can help prevent these situations, though it will take time: spreading awareness. When people know what we have, what we have gone through, how it affects our lives, and how it does not identify who we are, ignorant behavior can be avoided.
Personally, I prefer situations in which someone politely asks what happened to my foot rather than just staring. It gives me an opportunity to educate them on CLOVES Syndrome. Each person that I explain my syndrome to is one less person staring at me on the sidewalk. Because as soon as they know what I have, they stop staring. They understand, and both our lives move on as if I weren’t any different from them. Many people apologize profusely after they ask me that question and discover I have a rare disease, but in all honestly, I feel the need to thank them. Thank you for asking. Thank you for not choosing to be ignorant and just assume there is something wrong with me. Thank you for taking a moment to learn about a part of me so that you can better understand who I am.
Awareness does wonders. While educating people one by one helps spread awareness, it’s not quite enough. Sharing on a more widespread level can make a much bigger difference. Raising awareness not only for CLOVES Syndrome but also for all rare diseases presents the opportunity to educate the entire public and, maybe one day, the world.
This is CLOVES Syndrome Awareness Day. This is a day to take a deeper look into what CLOVES is. Take a few minutes to learn about someone’s story. Talk to your friends, family, or colleagues about this rare disease and how much help raising awareness can do for those affected. Share this blog post to remind others that rare diseases do exist, and they do affect people. The more that people know, the more support those with CLOVES Syndrome can get.
Support rare diseases, and support CLOVES Syndrome.