Roughly eleven years ago, I was diagnosed with CLOVES Syndrome. I was fourteen. I spent the first fourteen years of my life feeling incredibly alone, singled out, and wondering when I would ever know or understand what was wrong with me. That may be a common feeling for others out there in similar situations prior to being diagnosed properly, especially those with a rare disease. My mom, a nurse, fought relentlessly to find a diagnosis, and after attending medical conferences, talking with many doctors, and asking for these doctors to review my case, I finally got my diagnosis. Before we even knew what I had, my mom was my advocate. She was spreading awareness on my behalf to pin down what exactly I was living with. And she succeeded.
That is why I spread awareness. Similar to how my mom was my advocate, if we continue to fight for our syndrome, educate, inform, and advocate, we can get somewhere. Eleven years ago, I finally got a diagnosis. At that time, I connected with others like me who had CLOVES and met with the team in Boston who specializes in CLOVES. Shortly after, I continued to build connections with the CLOVES community as it continued to grow and underwent surgical treatment in Boston that I never thought was possible prior to CLOVES. And most recently, the CLOVES Syndrome organization itself is continuing to grow with additional support and grants so it can make the impact that it deserves to make in the medical field on treating CLOVES. Research is being done. Treatments are in the works. We do still have a long ways to go, but we have made so much progress in the last couple of years in finding ways to manage CLOVES Syndrome.
Every year leading up to and on CLOVES Syndrome Awareness Day, I try to express why it’s so important to spread awareness on rare diseases like ours and advocate for more research and progress. I probably sound like a broken record after all these years, but I will not stop advocating for CLOVES Syndrome and expressing how vital awareness is because we still have a work to do in finding ways to treat and manage our syndrome. To be honest, we will always have work to do.
Because of the progress we’ve made and the support we have gained through advocacy and hard work, we have already made substantial progress – we’ve received grants, expanded the CLOVES Syndrome Community, and seen clinical trials being rolled out which is a magnificent advancement in the CLOVES medical field.
That is why I raise awareness – to push for real, true progress because that is what we need for a disease as rare as ours. There are a multitude of reasons why I raise awareness, but here are just a few to start…
To gain attention of the public
Get people talking about it. That’s what I aim to do as often as I can. CLOVES is such a rare syndrome that hardly anyone really knows about it – not even most of the medical community. If we talk about our syndrome and get the public talking about it as well, word can really travel in this day and age. Gaining the attention of the public can go a long way and is a great way to promote the next point.
To gain attention of decision makers
It’s important to get people in power talking about vital matters so that we can gain their support and hopefully make substantial changes. The decision makers in this world can make a significant difference when we are aiming to make progress on certain things such as pushing for research, gaining support, fundraising, and holding awareness campaigns, among others. Writing to key decision makers and trying to get them involved to support our syndrome has been a more recent addition to my advocacy work for CLOVES Syndrome.
To share our reality with the world
This is a big one for me. Since CLOVES is so rare, many people don’t even know what it is, let alone what it’s like to live with CLOVES. It’s extremely important to share with others the challenges we face and what our actual reality is living with this syndrome. Why? So we can demonstrate to the public why it’s challenging to live with CLOVES, why we are spreading awareness, and why we need more research and support. Our syndrome matters and so do we. No one can paint a better picture of living with CLOVES than the people diagnosed with CLOVES themselves. Something as simple as sharing your story can go a long way.
To push for more research
Research. Is. Key. This is how we make real, tangible progress in the medical field. This is where we push for treatments that work and/or have little side effects. We are still very much in the beginning stages of finding effective treatments but we have made incredible progress recently. Because of the awareness that’s been spread, support we’ve gained, and hard work that’s been put in by the CLOVES community, there are now grants and clinical trials for medications that could be effective to treat CLOVES. This is huge. We started out knowing very little about this syndrome and now we have grants and clinical trials? Progress is real and it’s not slowing down! We have to keep up our efforts and keep advocating for our syndrome so that this research can continue.
To give us a voice
Yes we are rare, but we are valuable. Just because most people don’t know about our syndrome doesn’t mean we don’t matter. We have a voice and we will use it. There is a face and a life behind each CLOVES case. We are living this reality. We are the ones who know what it’s like living with CLOVES. Raising awareness means amplifying our voices to share what our experience is truly like and what we need to manage our disease.
To gain support
Support is an essential part of this advocacy work. The more support, the further we will get. Raising awareness is a key component in gaining that support. If we share with our friends and family who then share with their friends and family and so on, then the whole community will be talking about it (or more!). The more people’s attention we gain, the more support we get, and with that support, we can really come together to make the progress we need – for fundraising, advocating for research, educating decision makers, sharing our stories, etc.
To educate and inform
Educating and informing others about our syndrome is a crucial factor in getting others to understand our experience. As I’ve articulated many times, very few people know about CLOVES Syndrome since it’s so incredibly rare. Oftentimes when people ask what happened to my foot, I take that moment to educate them about my syndrome so they can at least walk away knowing what CLOVES is. I figure that in that moment, whether they were rude or understanding about it, I can at least inform them about CLOVES and why I look the way I do. Whether it’s on a level as small as that one-on-one interaction or on a bigger level such as your community, school, or workplace, educating and informing others about CLOVES Syndrome is incredibly important when raising awareness about it and our experience living with it.
That is why I raise awareness. If raising awareness is important to you, why do you do it?