You are not alone. The journey of sarcoidosis feels lonely sometimes.  After months or even years of misdiagnoses, difficulties of excusing yourself from events or activities, confronting challenges associated with going to work each day or caring for your family, and the struggle of the unknown future, you might feel you’ll never meet someone who truly gets it.

Ensuring no patient or loved one walks this path alone is what our FSR Patient Navigators are here to do. Over the last six months this program matched 43 people with others who share their experiences and have forged life-long friendships.

Click here to view more stories.

We are excited to encourage new passionate sarcoidosis warriors and care partners to apply and be trained to provide support to others on their sarcoidosis journey. For the first time ever, FSR is excited to invite international sarcoidosis warriors and care partners to help us provide understanding and support to those in need all around the globe.

Jessica, a passionate FSR Patient Navigator, is motivated by the memories of how lost and alone she felt when she was first diagnosed. Serving as an FSR Patient Navigator provides her the opportunity to ensure that others don’t suffer from isolation and fear that she felt at the beginning of her journey.

Jessica says, “The ultimate reason I made the decision to become a FSR Patient Navigator was to meet newly diagnosed sarcoidosis patients where they are and help guide them on this complex journey. I was not fortunate enough to have a FSR Patient Navigator when I received my first sarc diagnosis (pulmonary) 18 years ago, with neurosarc a few years later, and I certainly do not want any fellow sarc warriors to feel as alone as I did. Therefore, I stepped out of my comfort zone and made myself as an available resource to share my journey and allow others to vent and ask questions without being judged.”

Jim, a dedicated FSR Patient Navigator, provides insight into how taking on this role, not only helps his fellow sarcoidosis warriors, but also discusses how his own understanding and outlook on life have improved as a result of the work he does in support of others.

Jim says,As a person who suffers from advanced sarcoidosis, there is so much that is out of my control. I cannot control my body any longer, so physical tasks are out. I tire mentally, so deep thought is also out. Frankly, I do not even know how I will feel – physically and/or mentally – on any given day, until I arise that day. However, when I heard of the FSR Patient Navigator program, I knew this was something that I could do…something that I could control. While I cannot cure sarcoidosis on my own, I can help another sarcoidosis patient one on one. When I tell the patients with sarc that what they are feeling is real (validation); that they are not alone; and that there is hope, these same words reverberate in my ears and my heart as well. When I reach out to encourage another patient, I end up encouraged myself. Being a FSR Patient Navigator has given me greater access to tools and resources that I use not only for those I support, but also for myself. I’m not sure who gets the greatest benefit out of this program (me or my mentee), but I am sure glad I am part of it!”

Patient Navigators complete a specialty training program and are armed with the skills and knowledge to empower their fellow sarcoidosis warriors and help them become their own best advocates. If these stories resonate with you, you might a be good fit for this role.  Ideal candidates for this role have the following attributes:

  • You are a sarcoidosis warrior or are/have been a direct caregiver for someone with sarcoidosis, and have the time and passion to invest in one-on-one support
  • You’re comfortable talking about your or your loved one’s disease and the effects it has had, and you are prepared to provide advice on how to manage the challenges it brings.
  • You are already, or have a desire to become, an expert in sarcoidosis and chronic disease support and services on a national scale
  • You are able to commit to taking 1-2 patients/caregivers every 45-days
  • You have a record of excellence in providing one-on-one support to patients and caregivers.

Apply to be a Patient Navigator here by 11:59 PM on Sunday, February 28th.

If you need a Patient Navigator, or want to know more about all of our Navigators visit the Patient Navigator Page.