April is Sarcoidosis Awareness Month

What is Sarcoidosis? Since my diagnosis, I have been asked this question more times than I can count, even from Medical Professionals. Honestly, I only remember hearing of this Disease in reference to the death of Comedian Bernie Mack. Since being diagnosed, I have learned that there are thousands and thousands of people with this Disease, including well-known Celebrities and everyday people such as myself. It is often present in the body with no major symptoms and way too often, Sarcoidosis is misdiagnosed for many years.

So, what is it? Sarcoidosis is a condition where there is an abnormal collection of inflammatory cells that form Granulomas which, though alot of patients have them in their lungs, they can gather in any organ in the body, including: lungs; heart; kidneys; bladder; brain, eyes, etc. These Granulomas also gather on the skin and in lymph nodes. The extent to which the person suffers is different. There seems to be no specific cause, though there are many speculations, and it is not specific to any ethnicity or gender. Which is probably why there are so many misdiagnosed people.

In March 2016, I developed a persistent, hard cough. Literally, I coughed for months, non-stop and every part of me became sore. I was treated for Sinus Infections; Asthma; Severe Allergies and a bunch of other things. Also, during this time, I was losing a significant amount of weight without a specific cause. Ultimately, I was tested for several types of Digestive System; Colon, etc, Cancers, all test came back normal. Well, that was wonderful, but now not only was the weight falling off at an unhealthy rate, I then became unable to eat or drink without vomiting or dry heaving. Even sipping water was not tolerated. 

My Primary Doctor sent me to have a CT Scan of my abdominal area and during this Scan, they accidentally notice some "spots" in the lower chest area. This CT Scan Report was also sent to my Pulmonologist and she immediately told me that she was extremely concerned by what she was seeing and wanted me to have at PET Scan immediately. It was explained to me that this particular Scan/Test would expose any Cancer in my Lungs right away. Unfortunately, my Insurance Company refused to pay for it. My Pulmonologist made this request on May 17, 2016 and she and the Surgeon fought with my Insurance until September, 2016 when the relented and agreed to do a Lung Biopsy, which would take much longer to get results, but was the only way the Insurance would pay. SMH, just sad. Keep in mind all this time, I am still coughing, non-stop and losing weight. Not to mention, all of these Months I'm walking around wondering if I have Lung Cancer (which my Pulmonologist later told me was here fear.)

FINALLY in October 2016, after losing 67 lbs (no it was nothing to celebrate) I received the diagnosis of a severe bacterial infection in my digestive tract AND Sarcoidosis. I was informed that having the Sarcoidosis in my body, intensified everything else that was wrong. Once I was able to think straight, I began studying and researching this Disease. I attempted to share as much information as I could with my family and close friends. I have learned that there is still much to learn about it. Every Month I speak with someone who has been or had a loved one who has been misdiagnosed with some other Disease and all along it was Sarcoidosis. I encourage you to get informed as much as possible.

None of the material that I read or speakers that I hear say that there is a cure for Sarcoidosis, I have met people who have had it for 30-40 years with minimal symptoms. Some have been in remission for several years. Then, there are others who suffer a new symptom repeatedly and never seem to get a break. Please know your body. Know when something is wrong and address it. It could be something very simple but you should not ignore it and do not let others tell you that it's no big deal. When I first started losing weight, I was excited. I needed and wanted to lose weight. But then, it was too much too fast, and the nausea/vomiting began and I knew something was wrong.

Today, I have fewer Sarcoidosis flare-ups, but when it is triggered, I know what's going on so I don't panic. This Month I ask you to please get informed about this Disease. Learn the symptoms.

You may already know someone who has it and your graceful understanding would be such a blessing to them.

#Sarcoidosis

#SarcoidosisResearch

#SarcoidosisAwareness