As the world continues to shelter in place, if there is one city that has been hardest hit by Covid-19, it has been New York City. For patients within the rare disease community, the pandemic has caused significant distress for those relying on their regular treatments. For some, this could mean the difference between life or death.

For one rare disease patient, coming to us from Manhattan, she shares with us lessons she’s learned during this COVID-19 outbreak. Recently, we introduced you to Jamie Koll. Jamie has a rare genetic disease called Gaucher. At PSI, we are honored to present to you a series of guest blog posts from Jamie in the coming weeks.

Here, Jamie shares about living with a chronic disease during COVID-19. We invite you, the reader, to share with us on social media what lessons you have learned. In this, may we all find strength together in community and to know that we are not alone.

Living With a Chronic Disease During Covid-19

For the past six years, I have been living in the heart of New York City and we are the epi-center of COVID-19 in the United States. For the past two years, I have been on what is now lifelong treatment for my rare genetic disease, Gaucher. My main reason to stay in NYC during the pandemic was because of my treatment schedule; altering the location for it is not an easy change. I also am comfortable with my home nurse and have a routine with my treatment at my apartment.

A couple of weeks ago, my nurse was put on a COVID-19 emergency unit and that is when I realized the extent of the situation and the fact that I was going to have to make adjustments to my treatment schedule and mindset. I was forced to be more patient and flexible, something that is not a usual characteristic in New Yorkers. I had to find a new nurse who was not exposed to COVID-19, which was not such an easy task in the state with the most number of COVID-19 cases. This search caused a delay in my bi-weekly treatment by a week and a half. I was constantly in contact with my doctor who oversees my treatment to ensure every decision that was being made was safe and was the least risky to my health. Like everyone, I’ve gone through waves of emotions over the last few months, from anxiety to positivity, to helplessness, to happiness. My mindset moving me forward is the constant thought that this is not a forever circumstance and there is a light at the end of the tunnel. Now more than ever, it is important we stick together and build each other up and lean into our community and support system (virtually).

We are not living in the easiest of times and kindness is essential right now, especially for those living with a chronic disease and who may rely on treatment to survive. Many of us have had to make difficult decisions and live with a high level of uncertainty. I have also had a lot more time to reflect and wanted to share with you what I have learned thus far throughout quarantine.

4 Lessons Learned While Living With a Chronic Disease During COVID-19

1. Anxiety is normal. We are in unprecedented times and there will be lasting changes to our lives, we just don’t know what those will be yet. For me, I have always had anxiety, so when I start to feel anxious, I find it helps to redirect my attention with a television show, a webinar, a book, etc. I also limit the news I watch and try not to watch it more than once a day.

2. Boost your immune system through food, movement, and mindfulness. I am being as proactive as I can for this one. I have a weekly produce delivery that I subscribe to, a bi-weekly fish delivery, and I am really focused on eating whole and real foods to maximize immune boosting benefits. I also take a daily walk or do a virtual exercise class. I love to get my brain juices flowing through creative projects, meditation, or journaling. I find that the more time I put in to focus on these aspects, the better I feel and a better chance I have to strengthen my immune system.

3. Take this time to work on your passion projects. Write down a list of all the things you wanted to do or try, but you said you never had the time. Start those, you really never know where they might lead. For me, I have been focusing on creating exciting content on my social media channels, self development through webinars, and creating new and easy recipes that I share on my Instagram @girlswhoeat and @jaykoll.

4. Decisions about treatment options may need to be made. I am someone who had to go through this firsthand. I originally made the decision to not go to the hospital for an infusion I was supposed to get, to stay in NYC, and to talk to my doctor and fully understand what was going on from her end. It is important that you talk to your doctors and specialists and educate yourself. Try to get them on the phone or compile a list of questions by email. There might need to be changes to your treatment regimen so it’s best to prepare for that. If you have to go to the hospital for treatments, see if home treatments or any alternative treatments are an option. This is really the time to listen to your gut and make decisions that are best for you and your health.

I am sure we will continue to learn more about ourselves through this time and in one way or another, it might help us grow. We need to remember that we are all entitled to our feelings and some days we may feel differently than the next and that is okay. I hope everyone stays safe and healthy and I would love to hear about your experience during this time. Feel free to find me on Instagram or email me through my website!

About the Writer:

My name is Jamie and I was diagnosed in 2018 at 26 years old with a rare genetic disease called Gaucher Disease Type 1. I am on lifelong treatment and through this personal journey I committed to changing my lifestyle significantly and am now very passionate about living a clean and non-toxic life. I became a certified Health Coach in November 2019. My goal is to share health and wellness tips so you can live your best life with a chronic illness and I am a real life example that it can be done. Follow me on my personal Instagram ​@jaykoll​ and check out my website w​ww.jamiekoll.com​ to learn more about me! I love connecting with anyone in the chronic illness community.

Join us again on May 7th as we release an additional blog post from Jamie as she shares with us 7 Tips to Live a Healthy Life with a Chronic Disease.

A Conversation With Jamie Koll On PSI Podcast

We invite you to also listen to our recent conversation with Jamie on the PSI Rare Perspectives podcast. You can find this episode here:

Listen on Apple: https://apple.co/3cJ51qB

Listen on Spotify: https://spoti.fi/2KvYEdT

Please share with your network and write a review. We would love to hear from you!

How PSI Is Responding To Covid-19

Patient Services Inc. (PSI), the nation’s premier non-profit 503(c)(3) patient assistance program, has created an emergency assistance fund in response to COVID-19 to help patients navigate uncharted territory.  The COVID-19 pandemic has negatively impacted individuals, families, and businesses, affecting finances and health. PSI is dedicated to financially assisting patients with chronic illnesses; and we understand that this population is at greater risk for COVID-19. To support PSI patients and their families affected by the virus, we have introduced the PSI Emergency Assistance Program, to assist active PSI patients in getting over the financial hurdle that may have been created due to the pandemic.

To learn about how you might be eligible for program support, click here.

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