Did you know, April is National Sarcoidosis Month? You might ask what or who is sarcoidosis and how do you pronounce it?
A few months ago was when I first heard this word and yes, when I first heard the word "sarcoidosis" I had to ask for it to be repeated a number of times. I just couldn't understand what was being said or what it meant. It seems I am not alone. I recently learned that actress Tea' Leoni had the same reaction when her childhood best friend informed her she had the disease. As Tea' shared, she made Andrea repeat it about 50 times as she kept trying to understand what was being said. For the record, sarcoidosis is pronounced SAR-COY-DOE-SIS. Many people have this disease and some of the names might surprise you.
First, it probably helps to share what the word sarcoidosis means. Sarcoidosis is an inflammatory disease that can and does affect almost any organ in the human body. This means hearts, lungs, eyes, etc. Because of this situation, most patients have a compromised immune system, meaning they are more susceptible to other illnesses. Sarcoidosis can affect anyone, but in the United States it is more prone to show up in people ages 20 to 40 years old. The disease also seems to be more prevalent in people of African American or European heritage, especially those of Scandinavian heritage. It also seems to be more prevalent in women than men. But it is important to share that the disease is often misdiagnosed for years.
So you might ask what knowing about this disease has to do with charity and philanthropy. The simple answer is, a lot! Currently there is no known cause or cure and only some vague treatments. But there is hope! There is a nonprofit organization dedicated to finding a cure and effective treatment. It is the organization started by Tea's childhood best friend, Andrea Wilson and her husband Reading. Today the Foundation for Sarcoidosis Research (FSR) is the leader in providing the resources for research to be conducted. An outgrowth of this commitment is that daily the national headquarters, located in Chicago, receives calls from people suffering for the disease asking for help. FSR can and does serve as a referral to many.
As you know from the first paragraph, Andrea has the disease, and during her illness, which included everything from two heart attacks and a stroke to the treatments tried -- which even included chemotherapy -- she made a commitment. Her commitment or promise was that if she recovered, she would work to help others battling this often overlooked disease. She kept her promise and for the last ten years has been raising money, awareness and hope to help those affected and their families.
The Foundation for Sarcoidosis Research has enlisted some powerful allies...many of whom are suffering with the disease. Former Boston Celtic and NBA basketball star Bill Russell has the disease, as does his attorney daughter Karen. Check out their short video. Bill and Karen are committed to helping to find a cure for this often debilitating disease.
Another person full of energy and life who is affected by this disease is Karen "Duff" Duffy Lambros, the first VJ for MTV in the 1980s. Karen is committed to working with Andrea and others to combat this disease and find a cure. Comedian and actor Bernard McCullough, better known by his stage name Bernie Mac, battled the disease and lost his battle in 2008, but his family and friends are committed to helping those suffering from disease.
Pharmaceutical companies like Pfizer and others are working to test better treatment methods. The American Thoracic Society has also been doing research, as have doctors affiliated with Mount Sinai Hospital in New York City, the Albany Medical Center and The Cleveland Clinic.
Here are five tips that can help you in being aware of how to support those affected by sarcoidosis:
• Learn more about all aspects of the disease sarcoidosis by first visiting the Foundation for Sarcoidosis Research website
• Make a financial donation this month to your favorite nonprofit that is providing services or doing research in this area - after all is it National Sarcoidosis Awareness Month
• Offer to help a person or their family who is suffering from this disease - sometimes even the kindest gesture of making a meal, offering to take the children for an afternoon can make a world of difference
• Recognize that people suffering from this disease have a compromised immune system - stay away from them if you are ill or suffering the effects of a contagious illness; in other words, don't spread the germs!
• Share information with your doctor or medical provider so they are aware of this disease; a little information could change a life or in this case a diagnosis
Bonus Tip: Sometimes you need a HUG, not a K.I.S.S.! K.I.S.S. is the annual fundraising campaign for FSR and stands for Kick In to Stop Sarcoidosis. Learn more about this campaign and consider making a donation to help.
There are many diseases in this world. Become aware of this one, its symptoms and warning signals. By simply taking the time to become educated you will be making a difference!
Follow Lisa M. Dietlin on Twitter: www.twitter.com/lisadietlin