As the nation’s leading nonprofit organization dedicated to sarcoidosiswe believe in the power of community and that game-changing results in sarcoidosis research can be made when we work togetherSarcoidosis is a rare disease, all too often misdiagnosed and misunderstood. Signs and symptoms of the disease vary widely depending on the person, and many people suffer debilitating effects that can interfere with daily life. 

As part of our ongoing efforts to increase awareness and help find a cure for this disease, we are proud to celebrate Sarcoidosis Awareness Month every year in April. Sarcoidosis Awareness Month is a great opportunity to highlight those affected by sarcoidosiscreate conversations, and gain a better understanding of how the disease impacts those in our communities every single day. 

In this spirit, we asked our community to tell us what Sarcoidosis Awareness Month means to themBelow are some of the responses we received.  

 

It helps them find strength in community... 

 

Awareness Month is important to me because it helps us connect with other Sarcoidosis Warriors – when we see another purple post, we know that’s our sarc family, we know we’re not alone in this.  And it helps the people who care about us – and the general public – to get a better understanding of this disease and what it’s like for us to live with it.  – Kerry W.FSR Patient Advocate 

 

Awareness Month is important to me because I was diagnosed with sarcoidosis of the skin in June 2011. I did not know what sarcoidosis was, much less how to pronounce it. After getting more information and familiarity with this disease, I decided to start a support group in my area so I can help others understand sarcoidosis and feel they are not alone. So, in April 2012 I started SWLA Sarcoidosis Support Group. I continue learning from the Foundation for Sarcoidosis Research.  – Sabrina S., FSR Patient Advocate

 

 

It gives them hope for the future... 

 

Awareness month is important to me, because it brings hope that future patients that are diagnosed with sarcoidosis may have more options of care or even a possible cure. The more we educate and advocate, the more we will be able to raise funds for education and research into finding a cure for this horrendous disease. – Diane W., FSR Patient Navigator 

 

Awareness Month is important to me because… No one knows what sarcoidosis is!  Awareness is one of our biggest battles.  Even many members of the medical community don’t know or don’t think about sarcoidosis.  Guests on the Sarc Fighter podcast have said over and over that they were misdiagnosed for years before someone figured out it was sarcoidosis.  In order to have an eventual cure, it’s important that we keep sarcoidosis on everyone’s radar.  Hopefully then, us patients will be able to have a fighting chance at beating the disease! – John C., FSR Patient Advocate 

 

It is empowering...
 

Awareness Month is important to me because it gives a voice to the voiceless. It gives opportunities for Sarc Warriors to share their stories, who may not have had the chance in earlier times. It creates a platform for the actuality of sarcoidosis to be shared. It gives us 30 days to tell our stories and how we are affected by this illness. It also gives us the chance to inspire, encourage and motivate others. To be able to show people what strength looks like is amazing. Awareness Month is important because it is strength personified. – Chasta P.FSR Patient Navigator

 

It makes me feel EMPOWERED in several ways. First, Awareness Month allows me to actually do something positive about my sarcoidosis. Most days, I am in a reactive mode, doing what others doctors, insurers, hospitals, caretakers, pharmacies – tell me to do with my disease. During April, I am shouting from the rooftop every day! Next, I get to inform my close friends and family about what is really going on in my life. The typical response whenever they see me is You look good, meaning, Why are you always complaining about sarcoidosis? During April, I am very real about sharing the impact this disease has on my life – both seen and unseen – and on other Sarc-Warriors. As a result, my inner sphere has a better grasp of my day-to-day challenges. Finally, I am empowered to advocate with my legislators. Prior to FSR & April Awareness, I never would have thought my local, state, or federal elected officials really cared much about my problems and those of other sarcoidosis patients. However, having met with them and/or their legislative staffers, I now know they truly do care and are willing to act. There are proclamations recognizing April Awareness, but also more importantly a focus on research for rare diseases, such as sarcoidosis. Whenever I finish these meetings, I feel like I am truly helping the sarc world.That is why Sarcoidosis Awareness Month is important to me. – Jim K.FSR Patient Advocate, FSR Patient Navigator, Member FSR Patient Advisory Committee 

 

Awareness Month is important to me because all Warriors have a chance to unite to raise our voices and show support! – Marsha H., FSR Patient Advocate

 

Awareness Month is important to me because… it gives me the chance to tell the world that there are so many incredible people out there with a disease that is so rare, little known and often misunderstood. The fact that these folks continue to accomplish so many incredible things, all while living with sarcoidosis, is amazing. The public, government, and everyone in general needs to hear and learn about SARC! – Kraig M., FSR Patient Advocate

 

When I think of Sarcoidosis Awareness month, there are two thoughts that come to mind:

  1. I re-invented myself.
  2. Breathe and Be.

After a long period of misdiagnoses ranging from A-Z and a tremendous amount of stress and mental anguish, I was finally given the diagnosis of sarcoidosis.  I thought to myself, “Should I breathe a sigh of relief, or should I be angry and depressed?”  I was a nurse with a career that I had to give up due to this strange disease which even stumped many doctors.  I felt abandoned in my time of need and became angry at the entire health care system, which I had focused most of my life and dedication towards. Why did I not just get a common garden variety disease, like heart disease or diabetes which have had much more scientific research?   For years, I went from specialist to specialist and was given unproven treatments, medications, and the dreaded “deer in the headlight” look from doctors who did not have answers.  Ultimately, I had to learn to live with the diagnosis and begin the process of re-inventing my life.

 

“Someone I loved once gave me a box full of darkness. It took me years to understand  that this too, was a gift.” ― Mary Oliver. – Susan D., FSR Patient Advocate, Retired  nurse, Mindfulness/meditation instructor,

 

And, it is a catalyst for change... 

 

Sarcoidosis Awareness Month is important! Being sick is hard enough. Finding doctors that understand this disease shouldn’t be. Imagine having a disease so unknown that you sometimes wish you had something like cancer so that people would understand. My friends and family try hard to be patient with me when I have to limit or cancel plans, but they don’t really understand what I go through. The more awareness we can raise, the better chance we have that one day we may be understood by everyone. – Cheryl H., FSR Patient Advocate 

 

Sarcoidosis Awareness Month is a vital part of advocacy for patients and caregivers dealing with this rare disease and for those who have not yet been diagnosed. As a sarcoidosis patient, trying to navigate the healthcare system has led to seven years of frustration, anger, and at times, depression. However, knowing there are people who understand exactly what it’s like to be treated by physicians as if sarcoidosis is a mild disease that doesn’t affect our quality of life, gives me a sense of hope. For me, creating awareness means reaching out to our communities to educate, inform, and offer resources to anyone interested in learning more about the disease. It means talking to and interacting with physicians and policymakers to improve care and fund research. But I think the most important part of awareness month for me is the one-on-one conversations I have with people when they see my purple shirt/mask/hoodie and stop to ask me what sarcoidosis is. Finally, I love this quote by Michael J. Fox and refer to it often because it depicts the life of every patient with a rare disease. “This message is so simple, yet it gets forgotten. The people living with the condition are the experts.” Michael J. Fox – Dena A.FSR Patient Advocate, Member FSR Patient Advisory Committee 

 

Awareness month is important to me because I experienced what the lack of awareness means to a patient with sarcoidosis. My diagnosis was literally years in the making…  and I was very sick by the time my brilliant pulmonologist thought to have me scanned at Brigham and Women’s Hospital because she suspected sarcoidosis with cardiac involvement (both were accurate)I had endured 2 years of shortness of breath, fatigue, low grade temps and generally feeling miserable. My primary doctor just kept telling me to be happy. He ignored blood work that was out of the normal ranges. Too many of us have experienced the same. If we can raise awareness with physicians AND with the publicpatients will be less likely to accept the “pat on the head” and the “just be happy” advice we get from our doctors, friends and family. I am hopeful that from continued awareness, understanding will grow along with the boldness we need to challenge our doctors. Sarcoidosis patients deserve an answer and treatment and waiting years for either is unacceptable. – Pat L.FSR Patient Advocate 

 

Sarcoidosis awareness is important to our family because my dad was misdiagnosed with chronic bronchitis for about 20 years.  Left untreated, it moved to his heart and did significant damage before a “sarcoidosis aware” physician figured it out. – Sandra D., FSR Patient Advocate 

 

 

Thank you to everyone who shared their storieabout what Sarcoidosis Awareness Month means to them.  

 

Click here to learn more about Sarcoidosis Awareness Month and how you can get involved in making a change. 

 

FSR’s Sarcoidosis Awareness Month Activities are sponsored by Mallinckrodt Pharmaceuticals.