Patient story: Edward Drake

Feb 22, 2016
Patient story: Edward Drake

Edward Drake’s world turned upside down when he was unexpectedly diagnosed with kidney failure and put on dialysis all in the space of one week, and all before his 21st birthday. Here, he tells us how he transformed his situation to create his own foundation, YNOTT?, designed to inspire, educate and empower others.

Please note that this article describes the personal story of Edward Drake and may not be typical of the kidney transplant patient experience. This article is not intended as medical advice or to replace advice offered by medical professionals.

Interviewer (I): Edward, can you tell us how you were first diagnosed?

Edward Drake (ED): I was diagnosed at 20, my sophomore year at college, during a routine physical as I was preparing to play football at Eastern Michigan University. Leading up to that I had been having itching sensations, gaining a lot of weight and experiencing headaches but the doctor said everything was fine and my blood pressure was okay. That was in the spring, but I had another physical during the summer and that’s when my blood pressure alarmed my doctors. It was around 248 over 199. The next thing I remember is them rushing me to the hospital in an ambulance, hooking all these tubes up and a doctor telling me my kidneys had completely shut down and that I would have to start dialysis the next day.

I: How long did you wait for your transplant and how did you feel about it?

ED: I waited a little under three years. How I felt beforehand was: “Why me? Why now?” For everything I’d worked so hard at – in class and at athletics – just to come to an instant halt was devastating. I had never been one to cry but I cried many times while receiving dialysis, thinking of all my friends in college. I felt my life was on hold. But after pondering ‘why me?’, one night the Man Up Above said: “Why not you?” That’s when I started my YNOTT? Foundation, while on dialysis, helping out organizations like Donate Life and the National Kidney Foundation, then going to children’s hospitals and speaking to kids who were in a worse situation than I was. That helped to get me through, because I learned at 21 years old that it could be worse.

I: Can you tell us more about what you hope to achieve with YNOTT?

ED: I hope to achieve a life-impacting platform, where we’re not only impacting the lives of pediatric transplant patients but any individual faced with a life-altering situation. Organ failure was a big thing for me, but so was growing up in a single-parent household and overcoming those odds to get to school. ‘If I can do it why not you?’ is our slogan. It’s about saying: “Look at me, I was once in your shoes, I take 20 medications a day too; if I can do it so can you.” We have developed inspirational speaking programs and host health awareness events at various institutions to make people aware of what’s going on and give them encouragement that you can still do great things. We try to tell people that whatever you may be dealing with is not your be-all-and-end-all, that you can use your heartache to fuel your purpose and passion.

I: What stops people from being organ donors?

ED: There are myths but that’s understandable when people don’t have access to the right kind of information. Often I ask: “Are you organ donors? Why not?” They give their reasons, and I’ll reply: “Have you ever met an organ donor? Have you met somebody who needs an organ transplant? No. So where are you getting this information?” The answer might be the movie “Seven Pounds” or a poster, and then I’ll say: “My name is Edward Drake, I look just like you, and I received a transplant.” They say: “Wow, no way!” You’ve got to let them feel it, you’ve got to let people touch it, because different people learn in different ways, and react in different ways.

I: Finally, where do you see YNOTT? going in the future and what do you need to get there?

ED: We’ve been in the organization for about nine years and our focus has been on doing the work and impacting lives. Now we’re seeking partners to help bring greater awareness of organ failure, earlier diagnosis and prevention. We’ve already changed thousands of lives and want to continue doing what we do best, just on a bigger scale. We don’t know everything so I want to hear other peoples’ stories and come together with people in the advocacy community, and beyond, to learn from their experiences.

Patient story: Edward Drake

Stakeholder Engagement is a function within Corporate Affairs at Astellas that focuses on creating, building and maintaining third-party relationships. We serve as a conduit between Astellas and external stakeholders to help improve patient outcomes, improve access issues and address patients’ unmet needs head on.

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