Rare Disease Day 2025: Navigating life with Common Variable Immunodeficiency for 6 years

A couple of years ago, I posted about Rare Disease Day for the first time. I would never have pictured living life with a chronic illness, especially a rare, incurable disease that I had never heard of before.

Raising awareness for rare diseases

The reality of living with a rare disease is so complex. Some days are totally normal, and other days I still wonder why this happened to me. Sometimes CVID feels like this dark cloud that follows me everywhere I go. But, despite this feeling, it hasn’t stopped me from embracing life and chasing my dreams.

Rare Disease Day happens every year on February 28th, which is the rarest day of the year. It serves as an amazing opportunity to raise awareness and generate change for the roughly 300 million people living with rare diseases around the world. That makes up about 5% of the population, according to rarediseaseday.org.

If you would like an extensive PDF that has a plethora of information about Rare Disease Day, click here!

I love sharing about my experience with a rare disease because I think it helps people feel less alone. Navigating a rare disease can be extremely isolating. It feels like we are on the road less traveled. It’s difficult when there are aren’t many people to talk to or relate to.

How CVID changed my life

I was diagnosed with Common Variable Immunodeficiency (CVID) in July 2019 after dealing with extreme, debilitating illness for about 6 months. Receiving the diagnosis was both a relief and a tragedy. I was finally able to put a name to what I was facing and make sense of everything. But this meant that I had to rely on treatment for the rest of my life, and I knew that there would be battles ahead.

The fact that nearly 6 years has passed actually blows my mind. I have been doing plasma treatments for the entirety of these 6 years without stopping. What was once a shock to me became the new normal. I slowly began to accept my reality, and that my life differed from other young people.

As a young person, you never picture being sick. I thought I had many years before I would live this kind of life.

But, as depressing as it can be, I realized that my mindset was an extremely powerful tool. Negative thoughts were manifesting into my life and my physical being. I realized there was no point in living in negativity. There was no reason to tell myself that I couldn’t be happy. I could still chase the life I wanted, it was just going to be a lot harder than I thought.

Doing the hard thing is worth it. After spending so long doubting myself, I proved that I could still live out so many of my dreams. I graduated college Cum Laude, I’ve traveled the world, made so many friends, I met an amazing boyfriend, and I love my career. And the one of the best parts is that I have been able to share my story on social media, podcasts, and this website!

Living with CVID is a journey of ups and downs, especially because there are so many other diseases that patients can develop alongside it. I realized that it’s okay to be sad. And it’s okay to wonder what the future holds. But, I decided to stop grasping for control of things that were out of my hands. It is a strength to accept that what will be, will be.

A message to those that are struggling

As I’m writing this, I am in a position in my life that I never thought was possible a few years ago. I am living a happy, fulfilling, independent life. Having a rare disease became a small part of the bigger picture. I have amazing doctors that have helped me make this possible.

If you’re struggling, just know that there are joys ahead. You will have small wins. You deserve to find fulfillment, even with a chronic illness.

Remember that comparison is the thief of joy. You are in the right place. There is a reason you are here right now! It might not always make sense, and that’s okay. You are strong, and you will get through the battles ahead.

Happy Rare Disease Day 2025!