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/

Another big BANG

Time is going by so fast, it’s amazing that I already write my 100th blog post today. What a blast! I’m doing this since March this year, and I like it all more and more. Mostly I like the people who come and read what’s on my mind. It’s great that you take your precious time for reading my lines, and some of you also leave a comment. I love to read them, I read them all. I also go to other blogs, and it’s wonderful to ‘meet’ so many nice guys, to know more about them and their life.

Writing means a lot to me. I loved it already as a kid to write down so many things. I love to be creative, to think about a topic and how to write about it. I love to think, sometimes I maybe think too much. I know that it’s often better to simply do somethings, and I also tell myself, that without trying I will never know if it would work. Then I ask myself what would be worse: failing or never trying? What are the things we regret in the end? The ones we did, or the ones we did not even try?

I’m glad that I didn’t think too much about starting this blog. It’s my second, actually, the first one was in German like most of the stuff that I wrote before I started this. As writing always helped me, that blog was like a fresh start to me. I started to write it all in English, the language that had fascinated me all the time. For a reason that I can’t really describe. But I liked it, I loved reading books or watching Conan O’Brien when I was about 13 years old. He was the only late night talker I could watch on TV, now it’s Jimmy Fallon. Luckily I have internet now ;)

I love the American comedy, it’s so much fun, not like most of the German comedy. I don’t know that much funny German stuff, only two parodies: one of Star Trek (I was at the original set of that movie, and during a set tour we could replay parts of the movie, which was my first time in front of a movie camera, which is a very good memory and I still have the DVD and totally enjoyed it) and one of Winnetou. We do have some good shows and at least one good late night talker called Stefan Raab, who also writes and produces great music, but in my mind we can’t be compared to the US.

Anyway, I love Germany, and I love the place where I come from and grew up. But I also feel connected to the Americans, maybe because I have relatives there, and in Canada as well, and that’s why I started that blog. I had the chance to write and hoped that anyone would read it. I can improve my English, my writing. I don’t know yet where I’ll go after college, if I’ll spend some time in the States, or if I’ll stay in Germany. The future is a surprise, it would be lame if we could predict exactly everything, wouldn’t it?

I’d like to thank you, you who come to my blog. You are the reason why I still love to do that. That blog was the right decision, though I also struggled a lot. But I needed it, because I missed the English as much as the writing, while I was working for some years in an office after school. It helped me to end the darkest time I went through. I really don’t wanna go back to that time, in which I didn’t saw a future or a reason to live. But now I am back on track. This blog was like a big bang, the second after Jim made me see who I am, what I wanna do, what I missed. After 100 blog entries, I feel that another big bang has to come. Another thing I am working on. As people helped me, I try to give something back, try to help others. It’s a new project I thought of for a while, and I can’t do this on my own.

You can have a look here or by clicking on the tab above -> Charity project I follow my heart. Please spread the word, please write a comment, share your opinion on it, or if you have any ideas to improve it. Have you met such a person who just came into your life, and changed it that you are glad and happy that he or she did that? It don't have to be a person you met in real life, maybe also someone you saw a TV or anywhere else, that let you think about something and see it differently. That this person has inspired you in some way? If so, please tell me about it. Let us show that we love and appreciate the work of someone else. Let me create a big bang for others, too. Thanks.