Wednesday, August 24, 2011

Sarcoidosis Shame

I think it is a downright shame that this rare autoimmune disease that has been around for a very long time is still so unheard of! I think it is a shame that people are dying from complications of this disease because there are too few doctors and nurses who even have information on this disease. I think it is a shame that when you are in the hospital and mention that you have this disease  the staff have absolutely no idea what disease this is! I think it is a shame that people who have hardly begun their lives are dying from this when there could be something done! I think it is a shame that doctors tell their patients that this disease is nothing to worry about and that they will not die from it like cancer... when in reality it affects the whole body, damages organs and disables. I think it is a shame that the social security administration still does not acknowledge in full that this is a disabling disease. I think it is a shame that when looking for a physician who deals with only Sarcoidosis.... it is next to impossible to find! When is any of this going to change? It is true that not everyone with Sarcoidosis has it to the same extreme, but believe me  when I say that if you had this you would not want it! Every single day there is pain, discomfort in my chest, joints, back, under my ribcage, headaches, muscle spasms, numbness, tingling in hands and feet, night sweats, very little sleep,moodiness,pain through the shoulder blades, itchy and burning skin, extreme fatigue,and yet each day I try to get up and do the many things that need to be done around the house or run the errands, pay the bills, organize my husbands pills, etc. I still await any real help from my doctors. At best I have an appointment once again coming up with the Pulmonologist who deals with Sarcoidosis of the lung but obviously I have much more involvement than that. We will see which treatment plan he decides upon. Pretty much whichever is decided upon is only a small help anyway. There is no sure fire cure or any one medication that really works all that much better without side effects. This is really a shame that more research is not being done and that there are not more fundraisers and campaigns to raise awareness amongst the medical professionals concerning this. I give a hand to Cleveland Clinic in Ohio...they actually seem to be the most updated on Sarcoidosis and actually seem to be helping people, but what about the rest of us sarc patients who cant get to Cleveland? There needs to be a Sarc clinic in every major city at least!