Well, I have a rare disease and have been struggling with it mentally and physically since I have gotten sick 12 years ago, at age 20. In my case, only 1 in 1.000.000 people are affected by the disease and because mine is familial it's even rarer, even fewer people have what I have. I never like to talk about me being sick not even to my close friends and family. And that is actually the reason I started Poppy Makes.
I wanted a place where no one would see me as the sick girl and a place where I could feel more like the "old me". And because it has always been about what I make or bake, I never felt the need to share that part of my life. But in time I have learned that it is so important to speak about it to your loved ones. So it becomes the new normal, I mean define normal but you get where I'm going with this, normal for you so you won't feel the odd one out. And although I think it will always be a process and to learn to deal with all that comes along, I am at a point in life where I would like to share more about me in the hope that others might not feel so alone.
But what is a rare disease and how is a rare disease or condition defined? Although, I am not the person to come up with statistics because statistics don’t say anything about the individual. But that being said and to give you more of an idea. By European standards, a disease or condition is found rare when fewer than 1 in 2.000 people are affected. In the United States, it is considered rare when a disease or condition affects fewer than 200.000 people or 1 in 1.500. In Japan, a disease or condition is found rare when fewer than 50.000 people or 1 in 2.500 are affected. In medical literature it various how they define when a disease is rare from 1 in 1.000 to 1 in 200.000. But just because a disease is rare doesn't mean you may not know someone with a rare disease because there are about 5000-7000 rare diseases known to mankind today. And the estimation is there are 300.000.000 people affected by a rare disease or condition. Because diseases are rare it is also more difficult to research and to develop the right medicine and/or treatment just because there is a lack of market large enough to gain support and resources for discovering the right medicine and/or treatment.
So to give you an example and idea of a rare disease; you may have heard of ALS which got more publicity over the last few years. Just to be clear I myself do not have ALS I only took this as an example of what it means for a rare disease to get more awareness. So as I said you may have heard the disease ALS, it even went viral in the summer of 2014 because of the Ice Bucket Challenge. It has been estimated that there are about 16.000 ALS patients in America at any given time, although that of course fluctuates. ALS is one of the many rare diseases that exist and probably most of the rest of the rare diseases or conditions you and I have never heard of. That is why it is important to have days like these and get more publicity about rare diseases and conditions in general. Because diseases and conditions are rare so is the information, education, support, treatment, medication, understanding. And although maybe not everyone who participated in the Ice Bucket Challenge did make a donation the estimate says every 1 in 6 did. And because of that a $115.000.000 were raised in 2014 and since The ALS Association has been able to commit $131.000.000 towards their mission, including over $89.000.000 specific to global research collaborations. So my point being is it; that it is so important to raise awareness for rare diseases and/or conditions because although it may not affect a lot of people, many are affected by it. And more awareness does make a difference.
So you may ask yourself, I could have just googled most of it, right?! Uhm yes and yes I did as well, duh. But you may not have googled it yourself if you weren't told that today is international rare disease day and I thought this would be the perfect opportunity to tell you a little more about myself. So I guess I just wanted to share this a bit with you and if you want to see what you can do near your hometown there are all kinds of events worldwide which you can find on raredisease.org or maybe you know someone with a rare disease or condition you might want to read more into that. You could of course just ask them about it (depending on your relationship to the person and the person itself I guess) or google it beforehand make them feel understood and not alone. Or google rare disease and/or condition and find something you want to invest a little of your time in. I mean there are a million things you can do to contribute and create awareness. You don't have to do something big to make an impact. And even that you have just read this and may have learned a little something which makes you understand rare diseases and conditions a bit more, is a win.
A disease can make you feel very lonely even with all the love and support from your loved ones because, in the end, no one really wants to be the odd one out. That is why I wanted to start to share a little bit of my story so even if maybe you are the only person that reads this I want to say:
you are not alone!
love Poppy
sources:
https://en.wikipedia.org/wiki/Rare_disease
https://www.rarediseaseday.org
http://www.alsa.org/
*Disclaimer: I have gathered this information from the various website as shown above and from my own experience. I do not have any medical knowledge as in I am not trained in the medical field. I have taken Rare Disease Day as an inspiration to write this blog. It is just a view of my experiences and to create awareness for rare diseases and conditions. With these provisos, I have written this blog,
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