Living

With any medical event, but especially when it's a chronic illness or rare disease, medical debt can easily build up. Depending on where one lives, the cost of medical testing...

Access to lush, green natural spaces feels like a privilege to me. As a person living with a rare disease, narcolepsy, it isn't always easy to safely access the outdoors...

Humor plays a huge role in my life. I'm pretty open about having hemophilia A, and I rarely miss an opportunity to make my friends laugh. For instance, I recently...

I remember the day the genetic counselor called me with my son's diagnosis. She gave me information about a paper published on PubMed, and said that another family had set...

It can be so hard for people outside of the rare disease community to truly understand what we go through – ongoing symptoms, fatigue, never-ending appointments with specialists, continuously adjusting...

It was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain tumor. He was only 22 years old. It...

Having a rare disease poses problems many people can not imagine. It can be discouraging to share your experiences when others do not know your story. But it is valuable...

Let’s talk awareness proclamations. It’s likely fair to say that most of us have seen an awareness proclamation announcement by a city, state, or even country for something. Awareness proclamations...

One of the most exciting parts of the advent of the internet was the ability to quickly communicate with others from around the world. The first message boards, also known...

Have you ever been so affected by your rare disease that you weren't able to go grocery shopping, leaving your pantry empty for days or weeks at a time with...

Someone told me today that I was an inspiration. It's not the first time. In 2010, when I had the immense luck to be selected to go and work with...

As a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then, one day, nothing was the same. I found...

Social situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not quite getting it, it can certainly feel exhausting...

Your relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your healthcare team, they should be someone you are...

When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves with self-care but also self-love. We can easily...

It can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my own personal experiences of living with narcolepsy, as...

At age 65, I was diagnosed with cystic fibrosis (CF) by National Jewish Health (NJH) in Denver 6 months after I took myself there for a MAC lung disease evaluation...

Although hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that can come with mine. Having just turned 48...

I am beginning this article on my commute train to work, starting another work week after a typical weekend for me of rest and activities. Like many people with rare...

I am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but whenever I have a new medical condition, it...