Sarcoidosis Awareness Month
As April comes to an end, so does Sarcoidosis Awareness month. I know what you are probably thinking: “What in the world is Sarcoidosis?” That was my response as well when my father was hospitalized in 2008 and was freshly diagnosed. You see, he had gone to the ER and was soon admitted for what was suspected as a heart condition. A chest X-ray later discovered that he had Sarcoidosis in his lungs and was later confirmed with elevated blood work. It was only two years later that he was diagnosed with Neurosarcoidosis, which means it had gone from his lungs to his brain.
So, what is Sarcoidosis anyway? It is a disease that can affect almost any part of the body and happens when a growth of tiny collections of inflammatory cells form. This is most commonly to happen in the lungs, lymph nodes, eyes, skin and heart to name a few. The cause if relatively unknown but experts believe it results from the body’s immune system being triggered by an unknown substance whether that be infectious agents, chemicals or dust. It is unknown if the disease can be genetic, but it is suspected it can be. The patients at highest risk are females and African Americans but it certainly can affect anyone of any age at any time. There is no cure for this disease and you can only manage the symptoms through pretty rigorous treatment. Some may be lucky enough to go into remission and it can lay dormant for years. However, having it and leaving it to wreak havoc on the body over years can lead to organ damage, which is just one of the very few symptoms.
Symptoms are different from person to person depending on the form of Sarcoids. For my father, it started with severely swollen legs and feet, which led them to first suspect heart trouble. But as it got worse in his lungs he also suffered from severe shortness of breath, wheezing, chest pain and an overall decrease in quality of life. When he was diagnosed with Sarcoidosis in his brain, symptoms include but are not limited to numbness in arms, legs, hands and feet, loss of hair at numb sites, loss of vision, loss of hearing, burning eyes and tingling sensations. Some overall symptoms he has had since diagnosed include fever (aches everyday), swelling, skin rashes, severe fatigue and burning of the eyes. These symptoms can be different from person to person, but these key factors seem to trend across the board: pain, fatigue and a decrease of quality of life. What feeds even more into the struggles is that most of the medications that help to suppress this illness can cause other health problems with long term use. My father takes approximately 17 medications DAILY in relation to Sarcoidosis alone. Some of them are to help with the side effects of long-term steroid use and other medications – truly a never-ending battle, which also leads to frequent doctor appointments, including traveling to Cleveland Clinic for appointments, annual lab work and many extensive and expensive tests.
If you have ever met my dad, though, aside from walking with a cane, he looks great and you would never suspect the pain and struggles he faces daily. In fact, that seems to be one of the worst parts for patients. It’s the comment, “You don’t look sick.” For people with Sarcoidosis, pain is a tremendous part of everyday life and something these strong people have learned to live with. When they say they are feeling “good” it means something completely different than what “feeling good” means to most people. Good doesn’t mean the absence of symptoms and pain but rather it is a manageable day. However, a “bad day” usually entails lying in bed all day unable to move. You even may know some celebrities who have Sarcoidosis and have advocated for it. Floyd Mayweather Sr. (professional boxer), actress Tisha Campbell (as seen on “Martin” and my personal favorite “My Wife and Kids”), Alexei Sayle (comedian), Reggie White (deceased American football player), and very well-known American comedian/actor Bernie Mac, who passed in 2008 due to complications from pneumonia because of his underlying condition: Sarcoidosis of the lungs.
Being blessed with a platform to share this information with you all, I asked my parents as well as people around the world if there was one thing you wish people were aware of or knew about this disease. Their answers were incredible.
My mother who also has over 30 years as a RN said, “As with any autoimmune disease, assumption cannot be made on how someone feels by the way they look! These people may ‘look’ fine, but people with chronic diseases learn to deal with their issues, mostly because they realize there is no cure. They make the best of what they are dealt with, which is what I want people who are unfamiliar with the disease to understand.”
When talking to my dad and asking him questions for this blog, he agreed the hardest thing is the “you don’t look sick” comment. People I asked on Sarcoidosis Support groups on Facebook had the same thing to say. It was one of the most highly talked about complaints.
Another complaint commonly expressed was the lack of knowledge of the disease among the medical community. This isn’t even on the topic of finding a cure, but rather that doctors do not typically know much about what has already been discovered. Often patients are shuffled around, often for years, having unnecessary procedures after being misdiagnosed.
The brave men and women across the world I have talked to really just want to be heard and supported by friends and family that understand what they are dealing with. A lot of comments were wishing that medical staff and doctors around the world were more educated on this disease as it can and usually does affect every part of the body. Many people have described feeling like a test dummy. One woman from the UK stated there are very few doctors who specialize in it, which causes her to travel to the other side of her country for treatment. Some patients also struggle with pain so much, they have no choice but to resort to pain clinics where patients are often stigmatized when they are simply seeking a little relief. Another comment that caught my eye I can personally attest to is the uncertainty of the future. One user stated that it is so incredibly hard to make plans because you just never know how you’re going to feel or how you will wake up from one day to the next.
If you’ve made it this far, thank you for taking the time to educate yourself on Sarcoidosis, which effects around 200,000 people in the United States. More than anything, thank you for educating yourself on a disease that has turned my family upside down. The future is not promised but it is bright, and we will continue to pray for a cure. Sarcoidosis effects around 200,000 people in the United States. Brittany Terenzetti explains more about this disease.