When I was first diagnosed with Sarcoidosis I had never even heard of this disease! Since then I have researched day after day to find out as much as possible about it and about treatment options. I also have met some wonderful people who have become like a second family to me. They are my Sarc family. They also suffer from Sarcoidosis and most are alone in their community as I am. The latest thing I am dealing with is hair loss. I have to admit...I am not thrilled about this! No one told me that Sarc could do this and none of my medications listed hair loss as a side effect! After doing some research on my own, I discovered that not only can Sarcoidosis cause hair loss in some people, but at least four of my medications also cause hair loss. I have to say that when my hair began falling out I was a bit upset and shocked to see a clump of my hair loosely falling from my scalp! Day after day more and more hair continues to fall. I have now purchased a wig. This is definitely something I never thought I would do! Anyway, I was thinking this morning that there is always an upside to everything! There really is... you see, I won't have to mess around with my curling iron for an hour every day anymore. I get so tired of plucking my eyebrows! That will no longer be a morning ritual as I lose those. I suppose I won't have to worry about unwanted facial hair either and that is really an upside! This wig thing could really become quite fun actually. I could have bunch of different ones...different styles, different colors...why a new me any time I please! No more being down in the dumps over hair loss for me! I choose to look on the upside of this.
Monday, February 27, 2012
In two more days...February 29th,2012, people all over the world who have a rare disease will be acknowledging this day as Rare Disease Awareness Day. There are events scheduled all over the globe to bring the public into a better understanding of these rare diseases. One of these diseases that actually does make the "rare disease" list is the one which I have.....Sarcoidosis. I have read a lot of literature about this disease since being diagnosed and I can tell you firsthand that much of it is either outdated or just not accurate. I also, since being diagnosed have joined up with other people worldwide who also have this disease. We have many symptoms in common that affect our entire body, yet the medical profession is still looking at this disease as a "lung" disease and instantly gives every Sarcoidosis patient a Pulmonologist and a bagful of Prednisone. Perhaps that works for the mild cases, however I know firsthand that just because the lung symptoms improve doesn't mean you are better. Sarcoidosis affects the immune system and the entire body. I know from talking with others online that I am not alone in my pain ...besides the lung symptoms, this is what Sarcoidosis is REALLY like.....Chronic fatigue, joint pain, bone pain, daily headaches,tingling and numbness in hands and feet,strange skin rashes, muscle cramps, blurred vision, burning and itchy eyes, cataracts, hair loss, chronic cough, chest pains, kidney problems, heart problems, liver problems...and it goes on and on. I think it is time for the medical profession to wake up and realize this is a multi system disease! Stop treating it as if it only affects one part of the body when it affects the entire system! There needs to be so much more research as to which medication actually works to help the immune system and slow down the progression of the granulomas which this disease produces in the lymph nodes and organs. Sarcoidosis patients like any other patient with a chronic illness, get discouraged and lose hope because their doctors just don't know what to do to help them. If you know someone that has Sarcoidosis ...offer support at least emotionally so they don't feel as if they are fighting this alone.