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.
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