It’s always remarkable to me when I “meet” someone on Zoom, and I can actually feel their energy exude beyond the bounds of my laptop. That’s exactly what happened when I met Kya - a dog mom, soccer coach, and quite possibly one of the most vibrant humans I’ve ever met.

Speaking with her, you’d never guess the immense challenges she has faced over the past eight years. The year before her diagnosis was especially devastating—she unexpectedly lost her eldest sister, her dog developed a tumor, and her father was diagnosed with stage 4 cancer. As she put it, “I took a lot of hits that year. I didn’t really pay attention to how I was feeling, myself.”

Understandably, she didn’t initially recognize that some of her symptoms were linked to paroxysmal nocturnal hemoglobinuria (PNH). As she started feeling increasingly unwell, she attributed it to the high elevation in Colorado and the immense emotional toll of her recent losses. Assuming she had the flu, she visited the doctor in February. However, after running tests, the doctors confirmed it wasn’t the flu—her hemoglobin was alarmingly low, below 6. She was immediately sent to the hospital for a blood transfusion and IV treatment. After a week of hospitalization, the ER doctor presented her with two options:

Discharge her with some iron supplements (the option she normally would’ve taken)
Talk to a hematologist and explore if there’s something deeper they didn’t find (the option she took)

Though nothing apparent was coming up on her blood tests aside from the very low hemoglobin, the physician felt something was off. While they were discussing her history, she mentioned her sister’s untimely passing, which was a result of a blood clot that developed following a surgery – she had no prior health history.

After learning about her sister, he referred her to an oncologist and hematologist, who suspected PNH. After a bone marrow biopsy confirmed, she immediately began infusion treatments every 14 days.

The first five years were really tough, but currently Kya’s happy to report, “I have my health under control, and it feels good.”

Q&A with Kya

Q: As someone who was always healthy with minimal need for healthcare, how did you mentally accept the idea of infusion treatments every 14 days?

A: God gave me that strength on that day. [After my sister’s unexpected passing], I didn’t want my parents to bury another child so I made a deal with God. I promised to put everything aside if I got to be healthy again. And I promised myself that I’ll deal, so in 5 years, I can have a happy heart on the other side. This was a promise I kept to myself – from the sick Kya to the healthy Kya.

From a logistical standpoint, I created a routine. When I first started, I had hard copies of everything - every lab, every result. I would show up with my “luggage,” I’d check in, they’d do my labs, I’d meet with my doctor, and then the infusion nurse. Having the routine made it easier for me.

Q: If you could go back in time and talk to your past self, just after receiving your diagnosis, what would you say?

A: You’ll get through it. Stay focused on what you know is right and keep going. Keep getting up and keep going until you can’t. And I haven't gotten to the point where I can’t.

In 2018 I was driving and got T-boned on one side and was literally wrapped around a pole. That was the year after my diagnosis. I didn’t feel it, but the fire department removed me from the car. I got to wake up and showed up to my next infusion with a broken clavicle. I told myself, I get to come to this infusion center, and at least I made it and am able to receive my infusion.

Because I get to be alive, I have to help other people. I try to live every day for those who don’t get to. I haven’t quite figured out what that will look like long-term, but I can start small by contributing to this trial, and I’ve started to use [Folia] everyday.

Q: How do you use Folia?

A: My perspective is that you get what you put into it. I wanted to info dump everything I know, and then your team can make sense of this all, you can help us.

I also found myself a good supplement regimen, and I’ve been able to enter it on the app to set reminders. It’s helped me not miss an important supplement and see when I’ve exercised. The more information I put into it, the more I receive, the bigger the picture, and the more I can provide to my physicians. Folia shows me everything about my PNH, in one app.

Q: How do you share Folia with your doctor?

A: My doctor wants to see more data in Folia before adding additional medications or supplements - this way we can make a more informed decision together. I should also say that I run all of my supplements by my doctor and pharmacist to make sure nothing I’m taking interacts with any of the medications I’m on!

Q: Since receiving your PNH diagnosis, what are you most proud of yourself for?

A: I’ve just recently been able to identify that I am proud of myself. The fact that I am proud of myself is something I’m proud of. But also for taking a risk and accepting treatment. I made a hard decision in order to have an easier life, but I made the right decision. Old Kya would’ve talked herself out of infusions every 14 days, but I didn’t give into the fear.

Q: Where did you seek support when you were first diagnosed?

A: The AAMDS Foundation and NORD were where I started my journey and are still my go-to’s for most things relating to PNH as a patient, and specifically support groups. Outside of my care team, guidance from my Alexion Onesource case manager was so helpful. She was the first to reach out to me shortly after my diagnosis and so flawlessly explained what to expect in my days ahead leading up to my first infusion. She was by my side during my battle and didn’t let me give up receiving treatments every 14 days, no matter how exhausted I was. I credit her and many of the health teams in Colorado for allowing me to fight beyond those first 5 years, which were the toughest. So with that said and to my fellow Rare Warriors, utilize your case managers with whichever drug/treatment you’re on. They intentionally choose careers to help people like us. If you can’t find one, call me and let’s see what we can do about that.

Q: What helps you when you feel most isolated?

A: Having a rare disease is isolating, but one thing that helps me get through this battle is effectively leveraging the hours that most, including the previously unhealed version of myself, take for granted.

I’m driven by books, knowledge, and sharing what I’ve learned! I have a small and growing collection of books that I call my Wounded2Warrior library. Each book in this library has helped me grow through my wounded chapters in life to eventually the warrior I hope to become. It includes books by thought leaders and authors that have inspired me throughout my life. A few include books by Seth Godin, Marcus Buckingham, Dr. Jordan Peterson, Robin Sharma, Lindsey Vonn, Edward De Bono, Bessel Van Der Kolk, MD., Dr. Henry Cloud, Thomas Erikson, Paulo Coelho, Andy Andrews, and Jim Collins. These aren’t nearly all of them but go ahead and add them to my list of heroes.

With PNH sometimes your physical body gives out whenever it wants and your eyes cannot handle electronics, so I pick up a book and get to work. The best form of winning is growing. I keep this mindset even on my weakest days. The energy generated from being inspired is like none other.

Q: Anything else you’d like to share with other PNH patients?

A: Find joy in the smallest things in your daily life. I’ve taught myself to seek out joy where I can find it. Teaching soccer to kiddos brought me much sunshine on the darkest days. They don’t realize they’re teaching me more than I’m teaching them. They make my PNH battle worth it all. Plus, dog life with my BFF Copper Duke (aka Sippy) – dog life is another level of happiness for me, and I’m excited to welcome my new pup soon! Beautify your space with plants or other things that make you smile, however small.

Lastly, remark on the remarkable: Send random messages of kindness. Go and give out smiles, gratitude or compliments to those who you know get overlooked. Ask your nurses, doctors and health team how they are doing for once. Turn isolation into your happy peaceful place, and be generous with others. You’ll be glad you did. Remember, there is a light at the end of the tunnel. You’re not alone.

The Life I Get to Live: Kya’s PNH Journey