Today we’d like to introduce you to Olufunke “Funke” Ojuri.
Alright, so thank you so much for sharing your story and insight with our readers. To kick things off, can you tell us a bit about how you got started?
My health advocacy journey was born from my over 30-year struggle with the genetic, chronic disease called Polycystic Kidney Disease (PKD) and a life-saving kidney transplant. PKD is a genetic disease with no cure, where uncontrollable cyst growth eventually leads to kidney failure. A child has a 50% chance of inheriting PKD if a parent has PKD. When you have lived with an incurable disease like PKD and are blessed with a new kidney, you can’t help feeling grateful and wanting to give back.
I inherited PKD from my mother, who, along with three of her brothers, inherited it from her father. Five years ago, my kidneys failed. I was put on dialysis, and one year into dialysis, I was lucky to get a living kidney donation. Before my kidney failure and kidney transplant, I was looking for ways to get involved and spread awareness of PKD. I started off by fundraising for the PKD Foundation and participating in the annual PKD walk to help fund research for a cure. To date, Team Funke has raised $55,000.
While on dialysis, I traveled to Ghana, St. Lucia, and Canada, where I needed to pre-arrange dialysis treatments. I got to compare and contrast treatment facilities and options and discovered that in places without readily accessible health insurance, the choice to have dialysis treatments comes at the expense of paying rent, eating, or dying. This realization inspired me to seek out opportunities where I could help those who struggle with PKD and receive adequate health care. Through that process, I learned about the dismal statistics of transplantation and kidney care for people of color. About one and half years ago, I became an outreach coordinator for the PKD Foundation, spreading awareness of PKD and kidney disease, especially to people of color.
I share my story in the hope that I can support others on the same journey by putting a human face to the experience. There is a lot of medical information available on the internet. Finding human stories, however, are harder to come by. Even though you may not have the exact same medical experience I had, seeing someone who looks like you navigating similar issues or discussing medical issues in plain language can be helpful. In my small way, by using social media or speaking engagements, I try to encourage better kidney health awareness and hope for surviving a disease currently without a cure.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
My journey with PKD presented me with a few challenges, some more easy to navigate than others. As I reflect on my experience, I realize that there was always a lesson. As I approached kidney failure, I hoped to get a transplant and avoid dialysis – post-transplant outcomes improve with less time on dialysis. I was unable to hold off on starting dialysis in time to find a donor, but four months in, I matched with a living donor. I felt relieved to be able to put dialysis behind me with my surgery date scheduled. Before my transplant, my surgeon recommended a double nephrectomy to make space for my new kidney (with PKD, your kidneys continue to grow exponentially). The nephrectomy necessitated a blood transfusion, which created antibodies and left me incompatible with my donor. This news was difficult to receive, but ultimately pushed me to remain persistent and exhaust all options. I learned about the paired kidney exchange program, where patients with incompatible donors are connected to facilitate increased access to transplant opportunities. A year after I started dialysis, I finally had my transplant surgery and have enjoyed every minute of post-transplant life.
As an Outreach Ambassador for the PKD Foundation, finding my voice and creating a space to inform and influence patient outcomes has had a slow start. I’ve struggled with making time to create content, learning to use social media effectively, and finding the right audience. I’m working on reminding myself that the message is that spreading awareness, even just to one person, is equally important.
Through these experiences and more, I have learned never to give up. Keep pushing till you get to a positive outcome and most importantly, find happiness and joy along the way.
Can you tell our readers more about what you do and what you think sets you apart from others?
I am a Civil Engineer working with the U.S. Army Corps of Engineers in the design and construction of projects that reduce flood risk to communities and protect and improve our harbors and coastal waterways. I have worked with the Corps for 33 years, growing from a design engineer to the Chief of the Design Branch. The Corps employs a lot of professionals other than engineers in its offices in the US and around the world. Though the Los Angeles District has female leadership in other roles, I am excited to be the first black female in my role.
Over the years, I’ve become passionate about recruiting and mentoring younger engineers. A project I’m most proud of is a berm diversion that the Corps built to protect a community in the Mount Charleston, Nevada area that experienced mudslides from a burnt hillside.
Outside of work, I love to spend time with my family, travel, exercise, cook, and bake.
Before we go, is there anything else you can share with us?
The most valuable lesson I learned is to be adaptable. It is easy to see a PKD diagnosis as a death sentence and lose sight of one’s passions. While the experience might be different pre and post-diagnosis, it does not have to be the end. On dialysis, with advance planning, I was able to travel to three different countries rather than give up on my love for travel.
Finally, I am always looking for introductions and connections to people, community groups, and organizations, big or small, that can benefit from my message of kidney health and PKD awareness.
Pricing:
- To help Team Funke’s fundraising efforts for PKD research: https://support.pkdcure.org/team/Team_Funke
Contact Info:
- Instagram: @TeamFunkePKD
- Email Address: [email protected]
