Thursday, February 28, 2013

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:


Leora Yang said...

The sad thing about rare disease is the misdiagnoses that happen or can happen to the patient. Since it is rare, some doctors sometimes end up with wrong diagnosis, which can possibly cause the death of a patient. The lesson about having a rare disease is to get a second, third or fourth opinion. +Leora Yang

Sanny said...

Wrong diagnosis is the worst thing about it. My brother went to several doctors until one said he has Autism, but he wasn't sure. They did several tests and he went to several doctors but no one could say, what he has or that it's definitely Autism. But as this is the only diagnosis the doctors gave, a rare type of Autism, we live with it. But no one knows what he really has, that's sad. So I totally understand you.
No matter what you have, running to several doctors and no one can tell you for sure what you have, that can make you even more sick. And if you get the wrong treatment, because of the wrong diagnosis.

Thanks for stopping by.

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