Here it is 16 years after my diagnosis and the knowledge of what Sarcoidosis is or where its origin began is still a mystery. Why is this? I know for a fact that we Warriors are still fighting for our lives. We are still spreading Sarcoidosis awareness throughout our communities and on social media. We are still wearing our purple and holding our events. We are still obtaining proclamations from our governors of state. So what is the hold up? Why aren’t there more specialists out there to treat the many symptoms and problems caused by the disease and the medicines used to treat it? Why are we still not being treated in the emergency rooms across the country properly? Why isn’t there funding to find a cure? The answer is simple. They don’t care because it is not happening to them. At least that is my opinion. They are not suffering from the debilitating pain. They are not feeling their lives slip away. They are not dealing with the financial strains that the disease brings on the family. They are not dealing with the lengthy and costly misdiagnosis processes. They are not being looked at like they are crazy.
No energy. Tired of being tired. Pain beyond comprehension. Frustration and loss of self. Financial strain. Loss of friends and family who do not get what Sarcoidosis is or what it does to you.
If anyone else has an answer, please tell me.
Peace and blessings,