What made you want to become an ambassador?
Immediately after being diagnosed in January 2019, I got online and looked for ways to be an advocate for those with kidney disease. It was so sudden, unexpected, and unknown to get this diagnosis, so I wanted to join the team through becoming an ambassador through the American Kidney Fund. Joining together to educate policymakers across the country is so important, as this disease impacts so many people across the country and the policies adopted across the country can impact the patient experience so much.
How has being an ambassador helped you?
Being an ambassador has helped me feel as if this journey is not being taken alone. I have no family or friends who are impacted by kidney disease, so meeting other ambassadors who are at different stages of tackling this disease was beneficial. I now have a circle of friends who are also AKF ambassadors - we can offer support, advice, and guidance to one another along the way.
What have you learned from being an ambassador?
While I thought I was becoming an ambassador to help advocate for kidney patients, I actually learned quite a bit. Kidney disease is one of the top 10 causes of death in the United States, which I did not know. And there are so many legislative and regulatory fixes that could be made to make the lives of donors, caregivers, and patients much better.
Why should others become an ambassador?
If someone has a strong desire to be part of the change that we would like to see in our country's approach to medical research and access to care, they should consider becoming an advocate. There are no greater advocates than the patients and caregivers who can relay their firsthand experience with kidney disease to policymakers.
What is something you've learned about kidney disease and dialysis that you wish you knew a lot sooner?
I wish I would have known sooner that there is a support network out there and AKF can help connect us through the ambassador program. I also wish I would have known about Kidney Kitchen sooner - such great recipe ideas that are aligned with the dietary needs and restrictions of kidney patients.
How would you like to stay connected to other advocates?
I would like to stay connected through online channels.
Do you have any advice for newly diagnosed kidney patients?
My advice for a newly diagnosed kidney patient is to first take a deep breath. Partner with your medical teams and get your treatment plan finalized. Then look for ways that you can begin to help others - whether through advocacy, volunteer work, joining a support group. Think about how your experience can help others - meanwhile, you will also be learning valuable lessons and connecting with others who can provide you with the support and guidance you will need as this disease progresses.
What are some interesting facts about yourself that you'd like to share?
Becoming an ambassador does not require previous experience! The AKF team does such a great job of training their ambassadors so we know exactly what to say. Don't be afraid to step out of your comfort zone and become an ambassador!