30 million people are living with rare diseases in the United States today. That’s 1 in 10 Americans. Worldwide, about 350 million people suffer from rare diseases. If all of the people diagnosed with rare diseases lived in one country, it would be the world’s 3rd most populated country. How wild is that? For how isolated individuals diagnosed with rare diseases may feel, that sure is a lot of people in this world living with one.
And when I say isolated, I mean it. It can be incredibly isolating living with a rare disease simply because of its scarcity. You may feel like one in a million with your rare diagnosis, and that can be extremely debilitating in many facets of life. Personally, I never knew there were others out there like me until I was about 14 years old. I went 14 years believing I was the only one struggling with this rare, unknown syndrome—I felt so, so alone. Fortunately, I was able to meet others living with my disease once I received an official diagnosis, and that created a world of difference. Having a connection with others like you can really go a long way, but it can be difficult to meet others with your same diagnosis if very few people have it or even know what it is.
That’s where awareness comes in. Living in a world where people understand your rare disease would be magnificent—too bad that’s practically unfathomable in this world today. It’s hard to get others to understand a rare disease and what one goes through while living with it, but there is one way to start to tackle this obstacle: raising awareness. While it may seem futile to some, spreading awareness of rare diseases and people’s experiences with them can make a huge impact on those affected. Rare diseases don’t just affect the patients diagnosed—they affect their mothers, their fathers, their siblings, their friends. They affect many people in a person’s life.
And that’s not the only aspect of their lives that can be affected. The medical side of a rare disease can have an extraordinarily heavy burden on many facets of a person’s life. The financial aspect can create various barriers for a person when it comes to treatment and care. It can be very challenging for someone to afford the medical needs of a rare disease, whether that may be medications, treatments, surgeries, procedures (invasive and non-invasive), testing, doctor appointments—to name a few.
Emotionally, a rare disease can really take a toll on those living with one. Having to go through medical treatment more often than usual, struggling with physical pain, and living every day without people really truly understanding what you’re going through are only a few common experiences people with rare diseases have to live with.
Rare disorders involving some form of physical disfigurement can make it really hard for someone to grow socially. They may have the unfortunate experience of receiving unwanted staring or teasing that singles them out, which could really emotionally impact them and hinder their self-esteem. At a young age, this can be detrimental to one’s social and emotional development.
Living with CLOVES, I experienced this a lot going through school and still go through it in my everyday life even now. However, what makes these events easier to cope with is having support. Without the support of my family and friends, I’m not sure I’d have gotten through those hard times or even be the person I am today. Unfortunately, some may not have the necessary support to get through a lot of these burdens, and that is a very unsettling fact to think about. Although, getting the word out and spreading awareness can really help people when trying to find the support of others with your same or a similar rare disease.
This is only scraping the surface of what it’s like living with a rare disease. Everyone’s rare disease is unique—we all have a different experience. Some cases may be more severe, others may not have it as bad. But no matter what, living with a rare disease comes with a lot of hardships when there is little research done.
It’s time to talk about it. Today, February 28, 2018, is Rare Disease Day. It’s time to speak up about our rare diseases, talk about what it’s like to live with one, and exclaim to everyone out there that we are bigger than our diseases. This is a day for us to take ownership of our disease; to embrace our experiences; to announce to the world the adversities and battles that we have overcome to make it to where we are today.
Spreading awareness not only informs the world about the reality of living with a rare disease, but it also creates the opportunity for more research. More research is what we need for all of those rare diseases out there. Yes, we are rare, and yes, our diagnoses are rare, but that doesn’t mean we can be left behind in the dust when it comes to the advancement of research in our medical conditions. We need to create that space for more research so that treatments, supports, and hopefully even cures can be discovered one day. And we won’t get anywhere without spreading the word.
Living with CLOVES Syndrome has had its ups and downs. I, like many others living with the same syndrome, have run into obstacles, fought through the pain, and eventually gotten through the difficult experiences that go along with living with a rare disease. And I’m ready to join with others living with rare diseases to raise awareness to the public and decision-makers about rare diseases and their impact on people’s lives.
It’s time to #ShowYourRare and #ShowYouCare