Walking On Water - a Column by Shalana Jordan

Becoming sick with a rare and chronic disease is life-changing. It can affect your health, physical strength, diet, and so much more. But I never knew I would gain new “superpowers,” too, including a better understanding of my own body. In September 2020, I spent almost two months in…

In our society, we’re encouraged to always be working, active, and busy. So when we finally get some free time, it’s an exciting thing. But what do you do when you have nothing but free time for weeks on end? In September 2020, I was in the intensive care…

Doctor appointments: They’re the bane of my existence but also a constant part of my life. Nephrologist, hematologist, primary care physician, gynecologic oncologist, pain management doctor, physical therapist, cardiologist — the list goes on. I see each of these doctors regularly. I nearly died in September 2020 and spent…

Dialysis, which performs the kidneys’ work by filtering blood, is hard on the human body. It’s usually given to patients whose kidneys are functioning at less then 15% because of injury, infection, disease, or other medical complications. When I was on dialysis, it caused me some atypical side…

Death is something no one wants to talk about, deal with, or experience. In September 2020, after an asymptomatic bout of COVID-19, I landed in the intensive care unit (ICU) for almost two months with multiorgan failure and hemolytic anemia caused by atypical hemolytic uremic syndrome…

A rare disease diagnosis can be scary, overwhelming, and life-changing, often bringing unexpected health complications and comorbidities. During my time with a rare disease, I’ve learned that I have a proclivity for medical drama. In September 2020, I nearly died when COVID-19 complications triggered atypical hemolytic…

Each week, I write this column because I love sharing my raw experiences while living with two rare diseases and various comorbidities. I usually discuss stressful issues associated with being an atypical hemolytic uremic syndrome (aHUS) patient. But today, I’m going to switch it up and talk about…

It’s normal to feel embarrassment, discomfort, or shame in medical situations. Being in a vulnerable state can be a humbling experience. In September 2020, I nearly died from multiorgan failure caused by atypical hemolytic uremic syndrome (aHUS). I still haven’t wrapped my head around it. I ended up…

“You’re so brave.” I’ve been told this numerous times. I have a good friend who says it to me often. But how does one define bravery? When I think of bravery I think of someone fighting to right an injustice. Fighting for someone who can’t defend themselves. Or standing up…

Rare diseases are, by definition, uncommon, but I’ve been surprised by how many people are affected by them. About 1 in 10 people in the United States has a rare disease, or around 30 million people. So it’s likely you know someone who does. But as Rare Disease…