It’s National Sarcoidosis Awareness Day, And Happy (?) Anniversary

Five years ago today I awoke in a hospital room after an operation to have an open lung biopsy to diagnose my sarcoidosis. I blogged already about the torture of that surgery and recovery in Open Lung Biopsy – My Truth“, and to date it is the worst operation recovery I ever had. However, as bad as it was, it was a means to an end. I was positively diagnosed and treated. I’m chronic, so what can I say? I’m still being treated five years later with a few add ons, or what I like to call “options” – heart failure, pulmonary hypertension.

And my biopsy coincides with the National Sarcoidosis Awareness Day. Just five years ago sarcoidosis was a disease no one heard about, including me. If you did an internet search of sarcoidosis back in 2006, the information was dry, clinical and basic. I could not get an answer to what it was. As little as five years ago one would think that sarcoidosis only affected the lungs.

Now there are dozens of web sites and blogs dedicated to educating and supporting the people who suffer from this disease. Now when you go to a doctor they actually know what sarcoidosis is. No longer do I belong to a private club of people with a rare unheard of disease.

There still is no known cure for this disease, but with more people aware of it, and unfortunately or fortunately, it depends how you look at, more people are being diagnosed with this disease than ever before. No longer is it a Scandinavian or black person’s disease. It hits everybody. There is no pre-selection according to race. It’s an equal opportunity invader.

So here is a big thanks to all the amazing people out there that have worked tirelessly to bring this disease to the forefront. Now that it is moving to the general awareness, maybe there will be more research given it, and hopefully a cure.

Posted with WordPress for BlackBerry.

6 thoughts on “It’s National Sarcoidosis Awareness Day, And Happy (?) Anniversary

  1. Happy National Sarcoidosis Awareness Day and Month to you. You are totally right about the lack of information back in the day. But thank God things have gotten better and more and more information if being made available.

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  2. I just read your experience with ‘Open Lung Biopsy…the Truth’. It was as if it was my experience too (in 2006) and brought back all the memories. The only difference was, I did not know I was put on a breathing machine and when they took me off, I thought I was going to die right then and there….I could NOT breathe!! I still can not put pressureon my ribs. :o( Thank you so much for sharing your experience! and yes, you’re right that there is soooo much out there about our disease. :o)

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    • Sounds like you went through torture! Doctors don’t tell you how invase and how dangerous this surgery is, I guess because they know no one will go through with it. Thanks for the reply and welcome to my little blog.

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    • I meant to say in my last sentence:
      “There is so much more out there now than there was in 2006 about Sarcoidosis.” Yes, I knew more than my doctors then.

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  3. Torture is was. But, I can say that HOPE and COURAGE to keep on fighting this and telling myself over and over….I WILL BEAT THIS! Thanks for your reply.

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