Rare Disease Day 2021
Today is Rare Disease Day. A day to celebrate the overlooked, under appreciated and...RARE!🤍
Like many others, I am RARE. My case is confusing, I don’t have an official “diagnosis”, I’ve had every test and tried remedy in the book, I’ve confounded even the most experienced doctors. I am RARE.
Instead of looking outside the box, and taking extra time to search for any possible answers—many physicians get frustrated and brush off “RARE” patients because they can't find the answers. This send patients like myself on an arduous journey to different hospitals, care teams, and states, in order to receive the best possible care. Many patients don't have the means or opportunity to seek out other opinions or care and they just have to accept their circumstances.
Luckily, I have finally found an amazing team doctors who have turned over every rock in order to give me some sort of relief or answers. This isn’t the case for most patients dealing with a Rare Disease, and is one of the many reasons why I am so passionate about advocacy.
When you’re “RARE” you don’t get allotted funding, care specific floors/units, care specific nurses, support groups, coordinators or communities to rely on.
You’re lumped in with other areas, and just hope for best. There’s no game plan or timeline. There’s no warning for the pain and obstacles you will have to fight. There’s no care team, or group of physicians that know exactly how to treat you. We’re always searching for the best physician, testing, medication, and plan of care.
It’s exhausting and extremely isolating to feel so alone in this fight. Feeling this way has only motivated me to advocate for others in my position. We are a group of patients that require extra care and attention, but often get overlooked.
Rare, but not less than. 🤍🦋