“I have made it my personal mission to ensure all people affected by chronic conditions have one less thing to worry about in life. Nothing motivates me more than someone with a condition being able to live life to its fullest. I’ve always said chronic conditions may be complicated, but living with them doesn’t have to be. By sharing my story and through the creation of HemoTool and my nonprofit, I hope that I’m bringing goodness to the world.”
I had the pleasure of interviewing Dakota Rosenfelt, who is a student, entrepreneur and living with Hemophilia A.
Thank you so much for doing this with us! What is your “backstory”?
My name is Dakota Rosenfelt and I’m a 22-year-old student at the University of Missouri-Kansas City School of Pharmacy. I have severe Hemophilia A, a rare genetic bleeding disorder that affects the blood’s ability to clot. My condition led me to create HemoTool, an app that helps people in the bleeding disorders community better manage their condition, order medications and find treatment.
Can you share the story of your diagnosis, and what you did to not let it stop you?
I was diagnosed with severe Hemophilia A at 13 months of age, but I’ve refused to let that diagnosis set me back, define who I am, or limit my goals. I lived a happy and active life growing up, and from an early age I learned the importance of proactively taking care of my health and self-care.
One of the most important things I did to make sure hemophilia didn’t stop me was develop and commit to a self-care routine. Taking care of your physical and mental well-being is so important, even if you don’t have a condition like mine, and I recommend everyone find a routine that works for them. What works for me is a low-carb, low-sugar diet, daily exercise, and rest. In terms of mental wellness, I make sure to do something each day that I enjoy, stay organized, and reflect on the day: “What went well? What didn’t? What did I not get done that I should have?”
Actually, for people living with hemophilia, Bayer has a program called GAME ON which has helped me and is a great resource for learning more about how to eat right, stay fit, and live an overall healthy life with hemophilia.
Even though I have Hemophilia A, I’m not going to let this disorder stop me from living my life and accomplishing my goals.
Can you tell us about the accomplishments you have been able to make despite being diagnosed with hemophilia?
My biggest accomplishment is becoming a strong advocate for the bleeding disorders community. I hope I’m living by example and showing others that having a fulfilling life and achieving your goals is possible no matter your condition. For me, that is studying to be a pharmacist and exploring entrepreneurship.
I’m proud of the app I created as well as the nonprofit I founded, both of which help people living with chronic medical conditions through technology.
What advice would you give to other people who have a chronic medical condition?
A chronic condition shouldn’t stop you from living an active, healthy and happy life and accomplishing your goals. People living with disorders shouldn’t have to say, “I suffer from a chronic condition.” Instead we should be saying, “A chronic condition suffers from me!”
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
I’m really grateful for my mom. She has a medical background, which growing up was the difference between me having to be extremely careful in what I did and being able to go outside and play like a carefree kid should. Her knowledge made it so that I didn’t have to live life in a bubble.
How have you used your success to bring goodness to the world?
I have made it my personal mission to ensure all people affected by chronic conditions have one less thing to worry about in life. Nothing motivates me more than someone with a condition being able to live life to its fullest. I’ve always said chronic conditions may be complicated, but living with them doesn’t have to be. By sharing my story and through the creation of HemoTool and my nonprofit, I hope that I’m bringing goodness to the world.
Can you share “5 things I wish people understood/knew about people with hemophilia” and why.
Of course. First and foremost, people with Hemophilia are not spun glass. We can do most things those who don’t suffer from our condition can do, under the proper guidance of our treatment team. If we were to get a paper cut, we wouldn’t gush blood. Blood would just drip for a bit longer than someone not affected with hemophilia (the eye-roll this remark/assumption gets nearly gives us all a headache). Hemos don’t like being looked at as having “limits” and being treated as such is actually pretty degrading. Let us tell you what we are comfortable with! People who suffer from hemophilia sometimes have underlying problems as well, such as chronic pain or depression. These issues are secondary to our hemophilia diagnosis and stress the importance of community and being there for one another. Typically hemophiliacs are open to discussing their condition with anyone who may be curious, so if you know someone or know of someone who suffers, DON’T be shy…ask away!
Can you please give us your favorite “Life Lesson Quote”?
A quote I think about a lot is “Today is the tomorrow you thought about yesterday. What have you done to make it the best it can be?” Living with hemophilia, my life essentially revolves around the concept of taking care of myself today to ensure I have a healthy tomorrow.
Some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
I am really split on this because I look at so many influential individuals as role models and as a source of knowledge in areas where I would love to end up in life. If I have to narrow it down, it would have to be Ellen DeGeneres. Ellen has always stuck out as a voice of reason with charismatic positive energy and stands as a model for what it means to never give up. A lunch or meeting with her would further energize me to keep working towards my dreams and allow me to continue living on the happier side of life.
Originally published at medium.com