Working with neurosarcoidosis: Carol’s story

By Carol Hector, Manager of Employee Experience, US

​Sarcoidosis is a rare disease that is often misdiagnosed and misunderstood. With April being Sarcoidosis Awareness Month, #TeamGuidant’s Manager of Employee Experience, Carol Hector, shares her story on living and working with neurosarcoidosis.

I was diagnosed in 2019.
I started working for Guidant Global in August of 2010 and was diagnosed with neurosarcoidosis in 2019. It is a chronic disease of the central nervous system and that means I will experience inflammation in certain areas of my brain stem and spine.

While symptoms vary, it can create an impact on my working day.
The primary symptoms of neurosarcoidosis are dizziness, nausea and severe headaches. It has the potential to impact my day-to-day work as the dizziness and headaches can be difficult to manage, especially when you have to work from a screen.

Once a month, I receive treatment via an IV infusion.
While it’s a long process, I also take a high dosage of steroids as part of my treatment and am generally able to work without needing to take any time off.

When I first began treatment, I did not take time off. I would bring my laptop with me and work right through receiving the IV infusion. The treatment isn’t painful, but it is a very long process. Most of the time it takes six or seven hours, especially as the medicine must be administered very slowly.

At the beginning of 2021, I began taking paid time off for infusion days so I can focus on my health, and not feel rushed or stressed during the infusion process. I still brought my work laptop to stay in the loop on things, but not having the pressure to be totally available during the treatment is a massive help. The nurses usually joke and ask if I have any calls or work to do today.

My manager has been incredibly supportive throughout my treatment.
When the pandemic first hit, I was at risk because I was immunocompromised due to the steroids. However, before I could even begin to think about my own health concerns around how COVID-19 could affect me, my manager, Rebecca Blankenship, was on top of it and asked me to start working remotely immediately.

I really appreciated that my safety was taken so seriously, and was at the forefront of my manager’s mind, even before the state and government closed businesses.

Be upfront about health-related adjustments.
Prior to the pandemic, we had a partially remote working schedule. Now, I am fully working from home and will continue to do so for the foreseeable. I would highly encourage those who have long-term or chronic health problems to embrace open communication and transparency with your manager, and not downplay on the side effects that you may experience at work.

Helping them understand what adjustments you need to feel your best in (and out) of work will go a long way in setting realistic expectations from both sides!

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About neurosarcoidosis
Neurosarcoidosis is an uncommon, long-term disease affecting the central nervous system, including the brain, spinal cord and optic nerve and can cause inflammation within one or more of these areas. There is no cure for neurosarcoidosis but physical and occupational therapy can be introduced to manage symptoms.

Learn more about the disease and Sarcoidosis Awareness Month here.

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