Responsum Health sat down with IgA Nephropathy Foundation Creative Director Gisela Delgado to hear her kidney transplant story and discuss the importance of organ donation awareness and advocacy in minority communities during National Minority Donor Awareness Week. 

August 1-7 is National Minority Donor Awareness Week, a week that promotes specific awareness toward the need for more organ, eye and tissue donors, especially among minority communities. 

In observance of this important event, Responsum Health had the privilege of sitting down with the IgA Nephropathy Foundation Creative Director Gisela Delgado to discuss her personal battle with IgAN, her experience as a kidney transplant recipient and the specific issues minorities face when they need organ donation. 

Can you start by telling us your IgAN story and how you came to need a transplant?

When I was 14, I was rushed to the emergency room after having Coca-Cola-colored urine. It took six months of various testing to eventually be diagnosed with IgA Nephropathy via kidney biopsy. The doctors told my parents and me that there was no cure and no proven treatment, and that this disease would likely lead to kidney failure in 20-25 years. This was very upsetting and left my family with a lot of unanswered questions. 

When I was 30, I was rushed to the emergency room with flu-like symptoms. The doctors flagged my GFR and Creatinine levels, and I was put on meds to help with proteinuria and to treat high blood pressure. 

At 38, I reached end-stage kidney failure requiring a kidney transplant and was on the verge of dialysis when I received a donation from my brother. 

How close were you to dialysis before you received your transplant? 

I was literally on the precipice. My GFR was 8 and my CREATININE was 5.99.

Was your brother the only candidate you approached? 

Not at all. I did not approach ANY person. I shared my story and what it would mean for me to receive a kidney transplant. I created a KIDNEY campaign. www.kidneyforgisela.com 

Even if it is family, organ donation is a major decision; can you talk a bit about what that conversation was like? 

For me, it’s about sharing my story and explaining that even if YOU didn’t want to be a donor – if you share it – someone might be interested. Honestly – people can love you but still be very scared of donating an organ. That’s okay – you just want to be a little vulnerable. You are fighting for your life – even if it doesn’t look like you are suffering. People can’t help you if they don’t know.

How are both you and your brother doing today following the procedure? 

We are both doing great. And very grateful for that.

What would you tell people who are considering kidney donation but are on the fence? 

There are very few opportunities in life when you can actually save someone’s life and not be a doctor. Living donation is one of those opportunities. I would also encourage them to speak to people who have donated. 

Minority communities are disproportionately affected by poor health outcomes at practically every level; can you discuss the specific importance of organ donation in minority communities? 

You don’t see or hear about our community and donating (how it’s safe, how there is progress to help with wage loss, etc).  Also, in my experience, so many patients don’t realize that dialysis is a treatment, but so is kidney transplant. 

In your experience, both anecdotally and at the IgAN Foundation, how big would say the disparity in donation is between minority communities and the general population? 

The disparities are equivalent to pretty much what you see in overall healthcare. Large minority communities tend to be in poorer neighborhoods – access to information in your native language is a challenge.

How have these disparities contributed to poor health outcomes and quality of life overall? 

People are being diagnosed with kidney disease too late. #urinalysis2preventdialysis

What do you think can be done to remedy the situation? 

More outreach and education programs in the communities where the community is. Recruit doctors/patients that represent the diversity that you want to feel supported.

How can organizations like the IgAN Foundation aid in these endeavors? 

Outreach needs to be a priority. Empowering our patients to share their stories is powerful-people believe what they see.

On August 21, The IgA Nephropathy Foundation will be hosting their 2021 SPARK event, a one-day event geared toward helping patients and their families learn more about IgAN, living with the disease and being a caregiver to those who are affected. Register HERE to join!