As many of you already know, a few months back I received a diagnosis of IgA Nephropathy, a rare and incurable autoimmune disease that causes damage to the kidneys. I have been living with Stage 3 kidney disease for almost 6 months now. 

Things have been going well health-wise since my diagnosis—the disease has slowed or nearly stopped progressing, and I’m even showing some signs of improvement in my lab results. The medication I’m on is affordable and effective, with very few side effects. I’m receiving a lot of care and support from my doctors, friends, family, and from my fellow IgA Nephropathy patients. So many people have rallied around me these last few months. I feel empowered, loved, and fortunate. Most importantly, I feel very confident in myself and in my decisions regarding my healthcare.

This diagnosis has been a blessing in a lot of ways. It might sound like a cliché, but facing your own mortality really does give you a new appreciation for life. I’ve reevaluated my priorities and I’m spending less time on things that aren’t important. It’s a work in progress, of course, but I feel a lot lighter and free. I’m also coming to terms with my own talents and abilities, and becoming unafraid of sharing them with the world. I’ve made a conscious choice to stop dimming my light for the sake of others.

Not only has my perspective changed, but so has my community. Most notably, I have agreed to become an ambassador for the IgA Nephropathy Foundation as part of an initiative that will be launching in the next couple of months. I’ve met so many incredible, compassionate, intelligent, and dedicated people through the Foundation, and I’ve felt inspired to share my story and experience to help others. I’m excited for this project and what’s to come.

I had my first face-to-face meeting with the founder and several executives in New Jersey this past weekend, and on Monday I was officially accepted into the ambassador program. I have an absolute whirlwind of events and meetings coming up with the Foundation, and I’ll be doing it all while still working my full-time corporate job. I’m beyond thankful for this new chapter of my life and the opportunity to be a part of something historic.

Medically, this disease will likely follow me for the rest of my life. Even though I’m stable, I’m not out of the woods yet. Staying healthy and avoiding an immune response is my top priority. However, I’m not interested in allowing this to define me or dictate my life. I am choosing to be proactive. I am choosing to face it, accept it, and make the best of it every day. I am choosing to be hopeful and involved. I may have IgA Nephropathy, but it doesn’t have me.

By being a part of the IgAN Foundation and helping raise awareness about this disease, I’m fighting back—for myself and my fellow patients. The goal is early detection, prevention, and ultimately a cure, and I’ve seen how dedicated (and how close!) people are to finding one. So many people are fighting for this cause, and I’m proud to be part of it. I never thought I would be involved with something like this, but this is the ultimate “when life gives you lemons” situation.

There are so many big, exciting things happening, I’m trying my best to contain myself and not share anything before the right time. I will post more updates once I’m able!