National Sarcoidoisis Awareness Day

Happy National Sarcoidosis Awareness Day!  While it’s definitely not a happy occasion, I am happy to be able to do whatever I can to bring awareness to the disease.  There are so many who still don’t know about this disease, so I’ll take a moment to give you a little education.

Sarcoidosis (Sar-Coy-Do-Sis) is an autoimmune disease that causes inflammation.  It can affect any organ in the body, though it is more likely to affect other organs rather than others—like the lungs.  It primarily appears as a respiratory disease.  The disease is more common in African-Americans and women.  Sarcoidosis typically appears during the ages of 20 -40, however, there are now cases of young children being diagnosed. Symptoms can include any of the following:

Lungs:

·      Chest pain (most often behind your breast bone)

• Dry cough
• Shortness of breath

General discomfort or uneasiness often occur:

• Fatigue (one of the most common symptoms in children)
• Fever
• Joint achiness or pain (arthralgia)
• Overall feeling of discomfort, illness, or lack of well-being
• Weight loss (one of the most common symptoms in children)

Skin symptoms:

• Hair loss
• Raised, red, firm skin sores (erythema nodosum), almost always on the front part of the lower legs
• Rash
• Scars that become raised or inflamed

Nervous system symptoms may include:

• Headache
• Seizures
• Weakness on one side of the face

Eye symptoms include:

• Burning
• Discharge from the eye
• Dry eyes
• Itching
•  

The cause of Sarcoidosis is unknown and it is very hard to diagnose, as it mimics several other diseases.  And what’s worse, there is no known cure.  Patients are usually treated with corticosteroids like prednisone or immune suppressors like methotrexate or humira.  Now can you see why awareness is soooo important?!

I was about 6 years old when my dad was diagnosed with Sarcoidosis.  At the time I really didn’t know what was going on.  I knew he was sick and I knew he was scared because I remember hearing him cry after he was given an initial diagnosis of cancer (told you it’s hard to diagnose).  I knew something was wrong, but I didn’t know what to do because I was a kid.  My dad was my hero and superman.  I looked to him for comfort and support, how was I supposed to help him?  At the time of his diagnosis, the medical community knew even less than they know today about the disease.  His doctor basically told him, “Well if all you have is a little short-windedness, just go on and live your life.”   We considered him one of the lucky ones because he was able to do just that for quite a while.  It was later in his life (around 40) when the disease took its toll on him.  After much inflammation, he operated with the capacity of only one lung, the prolong use of prednisone to treat his Sarcoidosis induced diabetes, and the disease moved on from his lungs to his skin.  By 2004, the disease and the medication, which was supposed to help him, began to ravage his body and that’s when he began to get sick.  He was repeatedly hospitalized for the next four years.  In 2008, after switching from prednisone to Humira, he contracted pneumonia and, as many of you know, after 3 weeks in the hospital, he lost his battle and passed away.

Now I didn’t give you that background information to depress you, but to inform you.  I just gave you a brief synopsis of my dad’s health problems, but I didn’t share with you how afraid I was during that time.  It was so nerve wracking to watch my father go into the hospital time and time again.  Like I told you, he was my Super Man.  Superman isn’t supposed to be sick! And while I was 30, old enough to recognize that my dad was a mere mortal, he remained otherworldly to me.  And to watch my “Big, Black Man” go from being strong and in charge to a bed-ridden, near death patient was heart breaking.  By the middle of week 2, I couldn’t’ even go into his room anymore and see him because it hurt too much to see him in that state.  And that’s the thing about Sarcoidosis (and any disease for that matter); it doesn’t just affect the sufferer.  It affects the entire collection of people around them.  Not only does the sufferer have to deal with the effects of the disease on their body, their family, friends, co-workers, neighbors, pets, and anybody around them who cares, has to deal with it and what it means not only for the sufferer, but for them as well. 

That is why awareness is key! Awareness allows for provisions to be made for sufferers and family members alike because awareness takes them all into consideration. Awareness prompts the medical community to recognize the need to find out more so that they can diagnose and treat the disease better, which will put them closer to a cure.  A cure that is much needed and coveted not only by this here Daughter of Sarcoidosis, but sufferers and family members across the world.