3 Things That Help Me Cope With Living With a Rare Disease

In honor of Rare Disease Day today, I’d like to share how I emotionally cope with living with the rare disease, primary sclerosing cholangitis (PSC) journey. I also have written a list for you at the bottom of this post sharing my top three favorite rare disease organizations!

Jenna sitting on hospital bed wearing green gown and IV in arm — Moments before I was wheeled into my liver biopsy that diagnosed my PSC

What is Primary Sclerosing Cholangitis?

I live with an IBD-related autoimmune liver disease called primary sclerosing cholangitis (PSC). In the US, any disease affecting fewer than 200,000 people is considered rare, and there are only around 30,000 Americans living with PSC!

With this disease, the liver’s bile ducts become narrowed and scarred, which leads to fibrosis, cirrhosis, and liver failure. There are no FDA-approved therapies, but there is an off-label drug that shows promise.

3 Things That Help Me Emotionally Cope with Living with a Rare Disease

Living with a rare disease brings a lot of unknowns. But over the years, I’ve found three main things that help ground me.

1. Exercise

I love being active because it reminds me of how strong I am and everything I’ve overcome throughout my chronic illness journey. I enjoy living weights, doing Pilates, walking around the neighborhood, going on nature hikes, playing volleyball, and even doing a little snowboarding.

Feeling my body move can be so empowering, and it redirects my thoughts away from the unpredictable disease to something I can control. It also reminds me to be grateful for what my body can do today.

2. Journaling

I’ve been a writer since I was a little girl, but writing took on a whole new meaning when I started my chronic illness journey.

Journaling became a way for me to tame my unfurling thoughts. My notebooks became a place in which I could scribble down all my thoughts, fears, anger, and hope about living with a rare disease. I find it incredibly centering, peace-bringing, and cathartic.

3. Giving Back to the PSC Community Through Advocacy

I’ve been taking the off-label medication I mentioned above since January 2018, and I’ve been feeling fantastic. Unfortunately, PSC is not a well-known disease (even in the gastroenterology and hepatology space), so it’s difficult for patients to access this medication, vancomycin.

I was blessed with a doctor who had connections and knowledge about this medication, and now, one of my life goals is to spread awareness and tips about this life-saving off-label medication to the PSC community.

There are two main ways I’m advocating for the PSC community today:

Working as a patient representative in a research working group that’s focusing on getting this off-label drug FDA approved.

Creating a PSC Hub here on The Comical Colon. This section of my website is designated to PSC and the off-label drug, vancomycin.

Being diagnosed with this rare disease has given me a passion to share my knowledge and story with the hope that it will practically help others. Giving back to the PSC and rare disease community is a deeply fulfilling practice that helps me cope with living with the disease.

Blue coffee mug beside laptop with Zoom call

3 Rare Disease Advocacy Organizations You Should Check Out

If you have PSC or another rare disease, I highly encourage you to get involved with the rare disease community through nonprofits.

Such organizations usually offer amazing patient advocacy opportunities; put together webinars, summits, and meetings you can join; and share vetted information and research updates.

Below are three of my all-time favorite rare disease organizations.

1. National Organization for Rare Disorders (NORD)

On this patient advocacy website, you can view a list of all known rare diseases, accompanying rare disease organizations, and much more.

2. Global Genes

This amazing organization is always sharing new information about rare disease research and advocacy. They host multiple annual summits, have a full-fledged resource hub, and even have a patient portal that you can customize with what you want to learn about!

3. Rare Disease Day Website

This website has tons of great ideas on how to spread awareness every Rare Disease Day!

A Few More Organizations

There are even more organizations like Rare Disease Legislative Advocates, Everylife Foundation, and Find Your Rare. You should check them out too!

Any Fellow PSC or Rare Disease Warriors Here?

I’d love to meet you! Feel free to message me here or send me a DM on Instagram! Happy Rare Disease Day!