Rare disease day

Thousands of people suffer from different diseases and some of them are very rare. Thousands sounds like a huge number, but compared to the seven billion people on earth, it’s almost nothing. Even for the doctors it’s hard to identify all diseases, especially the ones that only occur to, let's say, 1 of 50,000 people. Maybe the doctors see such a patient once in a lifetime, and so don’t recognize the disease, don’t even think it could be that, because it’s so rare.  And every disease can be a bit different, or two persons who have the same and get the same treatment, react differently. It is not only about the symptoms, as every person is different, every disease can be different, too. Because they are rare, they are also not many experts, who know about them and how to handle them the best.

The patients don’t only suffer from their diseases, most of them need many years and see many doctors until they figure out what they actually have. Often they get many misdiagnoses and wrong treatment, that doesn’t help them at all, maybe makes it even worse. Some patients use the internet; try to find other people who have the same symptoms. Not only the patients suffer, also their families do They who wanna help, but simply can’t. Even many people can’t be cured, it’s better for them to handle and live with their disease when they know about it. What do I have? What could be the reason I have that? Is there a chance of healing? Is there anyone out there who has the same and so knows how I feel? That’s another reason why the internet is so important for them. They wanna find people to talk to, they need to feel that they are not alone. As much as these people love the support of their families, they can’t really understand what they are going through.

Today is the 6th international Rare Disease Day. I wanted to write about that, because it can happen to all of us. Of course I don’t wish that anyone has to go through this, and no one wants to think about it, but we all can be in such a situation one day. So, I dedicate this post to everyone who has such a rare disease. I guess it must be hard, and I would love to read your story. So if you have a disease and wanna write about it, or you know somebody who's suffering from a rare disease, and wanna tell me about it, I’d really love to know. You can also use the contact form if you want to. I hope that the people who haven’t figured out what they actually have, they soon will, because I know it’s easier to live with it, when you know your “enemy”. And it’s also easier to find the treatment that can cure you, or at least help you to handle the disease better.

Watch here the Official Rare Disease Day Video:

For more go to http://www.rarediseaseday.org/

Why?

Since last Friday that's the only question I have in my head. Why? I keep asking myself that, but there's no answer. I can't find one. Nothing would explain why this had to happen. There is no explanation for that. I don't have any words for it. What brings someone to do that? To shoot at small children?

This all made me very sad, and all my thoughts and prayers go to the families of the victims. The gunman took 27 lives, and destroyed their families. Kids who will never come back, who will never smile, never play, never laugh again. They died, and big parts of their parents died too. How hard must it be for them? No one can put that into words.

When I firstly read about it on Twitter, I read an article which was about a teacher trying to protect the kids and calm them down when even she was horrified. The kids were frightened, and one said: "I only want to be home for Christmas." And the teacher replied: "You'll all have Christmas and Hanukkah. All will be fine."
That really touched me and I had tears in my eyes.

Christmas is the time people should come together, families come together. We all work the whole year, some do that far away from their parents and families or have to travel a lot, but on Christmas - we are all together. Christmas and also Hanukkah are both holidays that remind us of the good things that happen, holidays of love and joy. I don't want to think about next week, when I think of the families who lost their angels.

So, there's still the question: Why? WHY? A question that is mostly asked by kids, kids who are curious, kids who want to know, want to learn things, to be prepared for life, to have their own life. That's why they go to school. But 20 kids can never ask anymore. 12 girls and 8 boys - all only 6 or 7 years old. Innocent people who had their whole life ahead. Now the whole world asks the one question: Why?

Where do we live when not even at school our kids are safe? - Just one of many questions I read on the internet. Questions that keeps me thinking and sad. It was not because of the teachers, no, they protected the children, tried to calm them down. Like Vickie Soto, 27, she's a real hero for me. She died because she shielded the kids, saved some of them. She loved them all, loved to teach. She gave her life trying to protect them.

Today are the first funerals. The funerals of young children who are supposed to live. Who are supposed to have a life. I'm thinking of the kids, teachers and their families. Praying. Hoping that such a tragedy will never happen again. And I keep asking WHY?



Don't let us forget the victims. 

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