It is a truth universally acknowledged that it’s never easy having a rare disease. From Behcet’s disease to cystinosis to idiopathic central precocious puberty, we all understand the pain, frustration, and misunderstandings that come with the rare disease territory.
And unfortunately, those will affect you no matter where you live in the world.
While we tend to focus a lot on patients in the US and Europe (specifically the UK and Ireland), it’s important to remember that people across the globe live and struggle with rare diseases too.
Take idiopathic central precocious puberty, for example.
This video shows a young girl in India–in Gujarat, to be specific–who has been diagnosed with this condition. You don’t have to understand the language to understand the concerns and fears of her parents–those are universal.
- We had no idea what was happening to our daughter.
- How are we going to afford her treatment?
- Why isn’t there more awareness about this disease?
- How is this going to affect her future?
- Why do doctors know so little about her condition?
Sounds familiar, right?
While there are a lot of things about having a rare disease that really suck, one of the best things is that we have an instant community. We know what each other is going through without having to really explain it.
And when you find someone who can put into words what it feels like to live with a rare disease, it almost feels like you’ve found a soulmate.
Technology is really an amazing thing. We can connect with people all across the world who know exactly what we’re going through every single day. And if you ask me, that’s pretty dang cool.