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/

Let's start a cause

This blog post is a part of the I follow my heart project

Helping is something special. It’s great when you can help someone, when you support him in some way. It’s always a good feeling. But many people think that they can’t do anything on their own, because they are just one single person, and one single person can’t do anything.  But together, when there are many single persons, they can reach a lot. Like on causes.com, on which everyone can put a pledge or cause, share this via Facebook and spread the word over the internet.

No matter if you are against child abuse, wanna do something against the greenhouse effect, if you wanna save a kid who was badly treated, you wanna give children a home who don’t have one, protect the environment, are against factory farming, and so on. Over 170 million people have taken action on the site so far, so you can reach many people when you put your cause on that site. So if you wanna help someone or do something good, there is a good place to find many people who will support you.

screenshot of the website

I already took part in the Turn Facebook Pink To Support Breast Cancer which was last year in October, because everyone should be aware of and support this. There are many women who have to fight against breast cancer. No one wants to think about it, but cancer can come to all of us. And almost everyone knows at least one person who has or had cancer. So I wanted to support this.

There are many causes on this site, and this is why I love it so much. Everyone can be a part of it, and help someone, support people and do something good. It’s not always about giving money, it’s about writing about them, that these people will be heard, that other people think about them. The internet makes this possible. One person is not only one single person anymore. We are all connected, and together we can do even more.

For more on causes click here.

There can be only one

sure it's beautiful, but do we really need this to be happy?
picture by Sarah Ackerman

What are the most important things in your life? The things you can’t live without? What makes you really happy? Have you ever thought about these questions? I am sure you have. I often ask myself that, mostly when I spend the day at a shopping mall. There are the kids who say: “Mommy, I want that.” or “Daddy, can you buy me that?” Some of the parents roll their eyes, saying they already bought their kids a new toy, or they have something similar, or they don’t have much money anymore to buy it. But kids are kids, the way they look at their parents – yes, they know how to get what they want. Teenagers aren’t differently, they go shopping with their friends, but after they asked their parents for money. They want the new smartphone, or an iPod, new clothes, or whatever. And adults? Well, women never have enough shoes, these two words simply don’t fit together. Men want a jersey, sports stuff, or tools like a drill to prove that they can do everything on their own. But do they need all that stuff? Who is the kid here to tell us what we should buy, what we 'wanna' have?

For many people Sheldon from The Big Bang Theory seems to be from a parallel universe. He just likes different things, doesn’t seem to be very interested in others. Mostly it’s like he doesn’t care what others think about him. But it does make him upset, like when he taught some students physics and afterwards he read their tweets about his lecture and he didn’t read nice stuff. He is as normal as we all are, but his interests are differently. He focuses on brainwork, and to distract himself he enjoys playing video games. But he doesn’t care about shoes or how he is dressed, like in that episode in which Penny fell in the shower and broke her arm and Sheldon had to pick her something to wear. And in this year’s Valentine’s Day episode he gave his assistant Alex 1,000 $ to find Amy a present that she likes. But in the end, he gave her a paper. A single paper that told Amy she is from now on the person to call if Sheldon has an emergency. The money was wasted on things not that important. The real gift, well, can’t be bought and therefore is much more worth. And it never loses it.

We spend lots of our time in front of the TV, we watch the news, we watch our favorite shows, sitcoms, movies. And it shows us a world, a world that’s supposed to be our world. But is this reality the real reality? There are many people out there who suffer because they don’t have much to eat or drink or are very sick. But do we compare ourselves to them? No, we watch the Hollywood glamour, and wish to have such a life. A life in the spotlight, a life without any money problems. Are these the greatest worries we could have these days? Why do we need so much money? Because we see these people and we want that big house, we want these expensive gowns, and we want all these super cool gadgets. The question is: do we need them? Do we really want them or do we only want these things because others have them?

do we always need the newest fashion to be happy?
picture by Bert Kaufmann

Do we already live in our self-constructed world, in our own TV world? Does it affect us that much, that it shows us a reality that is not real and we wanna do everything to make this real and forget the real reality? And wouldn’t that make us a bit like Sheldon, who doesn’t seem to be interested in the real world, but instead thinks he can do everything on his own and prefers to live on the starship Enterprise? Sometimes we all wanna go to another place, to escape from our everyday life. The TV helps us to distract. But it gets better and better, and some can’t distinguish TV world from real world anymore. But that is its intense. Like a kid looking into their Mommy’s eyes: “I want that. Buy me that.” And what does Mommy? She buys her kid what he wants, and is happy that he is happy.

But isn’t it the sparkle in our kid’s eyes that makes us happy? It’s not about the money we spent. When I go to the mall I mostly love to spend time with my friends. When we were at school we saw each other almost every day, but things have changed. I have realized that time is the most precious thing we have, so I just enjoy the time. It doesn’t matter what I buy, or if I buy anything at all. The TV is our starship Enterprise, our escape. But like Sheldon we can’t stay there forever, we have to come back to the real world. Don’t get trapped, don’t let TV manipulate you, show you some commercials and stuff, trying to convince you, that you need this for being happy. If you really wanna be happy, spend time with the ones you love, because no money can ever bring you back the time.