CLOVES awareness and what it means

CLOVES Awareness Day. August 3rd.

This day means a lot of things. A day to educate others about CLOVES. A day to share your story about living with CLOVES. A day to wear green or your CLOVES merch to represent this special day. A day to donate to CLOVES Syndrome Community to support them or contact your local officials about rare diseases. It’s a lot of important things jam packed into one wonderful day.

But to me, CLOVES Awareness Day is every day. I live with this syndrome every day of my life, and I will continue to live with it for the rest of my life. This day is really just a reminder for me as to how important advocating for CLOVES truly is. It also reminds me how much support we really do get for CLOVES and spreading awareness.

This day is more than just that though. On CLOVES Awareness Day, I’m reminded of my journey and how I got to where I am now. I think about how for many years, I lived my life thinking I had a completely different syndrome (similar, but different). And how relieved I was when I got that letter that one day explaining that I had CLOVES and what CLOVES exactly is. It felt almost exhilarating to meet a team that specialized in my syndrome — not only specialized, but discovered it and diagnosed me — and be presented with a few (not a lot) more treatment options. And when I finally met other kids like me at the mere age of 14, it felt like I was breaking down these walls that I didn’t even know I had up. I lived a lot of my life feeling isolated, but after being correctly diagnosed, everything just changed.

Reflecting back on my journey with CLOVES so far, I know that I’ve come such a long way since that day I was diagnosed. I remember how self-conscious I used to be and how little self-esteem I had in middle school and high school just because I looked different. I hated the shoes and the pants I had to wear and never thought any boy would like me. When I wasn’t asked to most school dances (apart from one) or on any dates, I automatically thought it was because I had a big foot. I almost just went to that conclusion without thinking and just figured, well…makes sense.

But when I wasn’t asked to dances, I almost felt relief because the last thing I wanted to do was attend a formal event wearing a dress and tennis shoes–the only shoe I could wear at the time–around all of my peers. I also remember worrying about my future as an adult and what I was going to do when I had to go to work or (hopefully) go on dates where I had to dress nicely and only be able to wear tennis shoes. As a child, that is what I was worried about.

I remember the days when I never wanted to show my bare feet to anyone. I hated going to the beach or the pool where everyone could see my foot in its natural form, and I hated wearing sandals when I didn’t absolutely have to wear them.

When I think back to that version of me, I just want to give her a big, warm hug and tell her that things will get better. I want to tell her that I eventually do become comfortable in my own body and work up the confidence to meet new people, do new things, and not worry about what others think of me. That I love going to the beach or the pool and literally wear my Birkenstocks any chance I can get with shorter dresses that I never had the confidence to wear in the past. That I not only end up being asked on dates but that I am getting married to the love of my life in 3 months who loves me for who I am.

But I learned, and I grew over time. And now I feel more comfortable than ever in my own skin. I love talking about my syndrome when I’m in the space to do so. I love being involved in the rare disease community. I love going out into the world feeling comfortable in the footwear or clothes I wear.

This is a very special day every year for me, as I’m sure it is for anyone else impacted by CLOVES. When I reflect on my journey thus far, it reminds me how much I’ve grown and empowers me to continue growing. This isn’t to say that I don’t still go through hard times because I certainly still do. But the progress that has been made feels so good.

So when you learn about someone’s story on CLOVES Awareness Day, make a donation, or do something else to support this day, remember that this isn’t just one day for those impacted by CLOVES. It means so much more to those people than you may think.