There are months for diabetes, cancer, days for puppies, coffee and heck today is National Pancake day! (Yes this is a thing and YES my parents will be at I-Hop for free pancakes). Tomorrow is Rare Disease day. Why is this more important than any of those other things – and yes dad even more important than pancake day??? Because 1 in 20 people will suffer from a rare disease. These people will suffer while the medical community struggles to figure out what is wrong.
They will tell their patients it’s all in their heads, that they aren’t really sick, that if they worked out more, ate better, slept more, slept less they wouldn’t be sick. HUH? I mean don’t get me wrong eating better can help you feel better and sleeping (more or less) will make you feel better but it isn’t going to cure you. Your illness isn’t going to magically go away – you may manage symptoms, you may even have remission from them, but the underlying disease will still be there!
What Nicole has, it isn’t rare, it’s rarely diagnosed! Its often looked over because doctors don’t know what it is or they aren’t willing to find it. They don’t want to look deeper than the surface, they maybe don’t have time or maybe they are insecure about not knowing. You see doctors are taught that they know everything! They are the doctor!! Guess what they are human – Crazy I know!! They make mistakes, they mess up, they don’t have all the answers even though we want them to!
Rare disease day means creating awareness of for things that doctors don’t know. It means as parents and patients we must educate our doctors while understanding they are doctors and they do know more than we do (sometimes) that they went through ALOT of school and we should respect that. I know many of us of had doctors blow us off, tell us we didn’t know what we were talking about. Some people I know have had their kids medically kidnapped and for those medical professionals I have no words!
This isn’t about them, this is about the remaining 90% who truly are trying to understand but can’t. Maybe because years of schooling have taught them that they have to know it all, or maybe it was their teachers. However, it’s our job to help them learn different. Help them know that our kids are different that they don’t know everything and maybe, just maybe we know more than they do. In that moment that we are a team, we are on a journey together and that may mean fighting in the backseat, arguing about which turn to take and when we should stop for food, but we are on a journey together.
Rare disease day means teaching each other how to work together and how to raise awareness for everyone!