HANOVER TOWNSHIP — On April 11, 2019 Mary Morlino was honored to receive a Proclamation from the Township of Hanover proclaiming April 2019 as Sarcoidosis Awareness Month in Hanover Township on behalf of the Foundation for Sarcoidosis Research.
Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure.
Disease presentation and severity varies widely among patients. In some cases, the disease goes away on its own. In others, the disease may not progress clinically but individuals will still suffer from some symptoms that challenge their quality of life. The rest of patients—up to a third of people diagnosed with the disease—will require long-term treatment. Sarcoidosis is considered chronic in people whose disease remains active for more than 2-5 years; in this population sarcoidosis can be debilitating and life-threatening.
Sarcoidosis Awareness Month offers a rare opportunity to focus attention on this devastating illness. Awareness matters because this helps to bring other patients together so they know that they are not alone in this fight. Awareness matters because it brings the illness to the attention of more physicians and medical professionals in the hopes of expediting correct diagnosis and more efficient treatments. Awareness matters because it brings Sarcoidosis into the radar of researchers, pharmaceutical companies and biotech organizations in the hopes to focus work on finding a cause and cure. Awareness matters because it helps fundraising efforts at the grassroots level as well as reaching out to foundations for support.
“I am a resident of Whippany and I was diagnosed with Sarcoidosis in 2014. It took 7 years, many doctors, innumerable tests and procedures to get to the point of a proper diagnosis. Until then, I had never heard of this disease which affects the functioning of my heart, lungs, lymph nodes, spleen and eyes. Six days after my diagnosis I had a Bi-ventricular Pacemaker/Defibrillator implanted. Six months after that, I suffered a cardiac arrest in my kitchen. Had it not been for the diagnosis and this procedure, my 14 yr. old daughter would have most likely watched me die that day,” said Mary Morlino.
Mary continued “I have been fighting for Sarcoidosis Awareness since my diagnosis, I have learned that there is no known cause or cure for this disease, many medical professionals are unfamiliar with this disease and without awareness, support and research a cure is not likely. I have been joined with other New Jersey residents who have Sarcoidosis to advocate at a national, state and local level. I have been involved with various awareness and fundraising efforts for the Foundation of Sarcoidosis Research.”
The State of NJ issued a proclamation in 2016 for April being Sarcoidosis Awareness month.
This year, with the help of the Foundation for Sarcoidosis Research, advocates are attempting to “Paint The Country Purple”. Purple is the designated awareness color. Over 87 buildings, landmarks, and businesses across the US and Canada were lit purple on Saturday, April 13th and surrounding days to raise awareness about sarcoidosis, a rare disease with no known cause or cure that affects an estimated 1.2 million people worldwide.
The initiative’s first lighting partners, the Durst Organization and One World Trade Center in New York City, inspired an international movement in which volunteers, including patients, invited lighting partners to also shine a light on sarcoidosis. In this inaugural year of the Illuminate the Night initiative, One World Trade Center and the skylines of at least 33 US states and 2 countries will be lit purple throughout April alongside many other activities within Sarcoidosis Awareness Month.
For a wealth of information on Sarcoidosis, including symptoms, treatments, research and support, click here.
