Geneve's Nephrotic Syndrome Remission Story

Meet Geneve

How often do you hit the pause button in this fast-paced world? Do you ever find yourself slowing down enough to see how beautifully the rose-gold rays of the sun bounce off the walls before dusk? Or let wonder wash over you when gazing up at a full moon and stars on a clear night? Or let peace cloak you when observing the silent, gentle descent of snowflakes as they blanket the world in white? 

I know, this is supposed to be a story about a woman who reached a drugless remission from nephrotic syndrome. But, I can assure you, after reading Geneve’s natural nephrotic syndrome remission story you’ll understand why I’m asking you these questions :) 

Geneve is a model and a holistic nutritionist. She was diagnosed with minimal change disease at the start of 2019 and, after an inspiring journey of healing and self-discovery, reached a drugless remission in the middle of 2021.

Before we dive in any further, I want to remind you that this is an anecdotal patient story I am sharing and not scientific evidence of any sort nor recommendations that you should be following without the guidance of a qualified doctor and/or practitioner. 

Nevertheless, in my opinion this story is a wonderful example of the healing power of neuroplasticity. Geneve – without at the time fully realizing what she was doing – changed her thoughts which changed her habits and transformed her life from one of illness to one of vitality. She adopted an anti-inflammatory diet, engaged in gentle and consistent movement, slowed her life down and took steps to face fear. Upon consistently nourishing her body and regulating her nervous system, what correlated and followed was nephrotic syndrome remission.

Geneve's Diagnosis Story

In early 2019 Geneve woke up in London with swollen ankles, feet, eyes and fingers. She presumed it was from eating a salty meal. However, this swelling continued to occur every now and then for a couple months. Multiple doctor’s appointments didn’t provide any answers, nor were her doctors concerned.

Finally, after several bouts of swelling, Geneve felt the need to go to the emergency room. A blood test revealed she had low serum protein levels. The doctor asked her about her diet. At the time, Geneve ate pescetarian and wondered if she wasn’t eating enough protein. But, as we all can foreshadow, adequate protein intake wasn’t the problem.

While in Sweden for a modeling gig, Geneve swelled up late at night at the end of a work day. She knew something wasn’t right and again went to the hospital. The doctors ran a urine test and discovered that there was a large amount of protein in her urine. They ran further diagnostics and told Geneve a specialist may be in touch.

Sure enough, Geneve was contacted by a nephrologist and told she had kidney disease. A biopsy was recommended, but Geneve did not feel ready for that yet. During this time, Geneve visited a Chinese medicine doctor and herbalist who performed acupuncture on her. She was so swollen that water was leaking through the places the acupuncture needles were inserted! She was also brewing Chinese herbs and drinking them per this doctor’s guidance, but this did not seem to help.

After several months of swelling, Geneve felt it was time to proceed with the biopsy. She parted ways with the Chinese medicine doctor and continued forward with conventional medicine (for now!).

She explained, “I couldn’t fit into my shoes at this point. I needed some answers!”

The biopsy showed Minimal Change Disease. Geneve hesitantly began the 60mg of prednisone her nephrologist prescribed and endured the classic prednisone side effects, like moon face, that all of us nephrotic syndrome patients know and definitely do not love.

Geneve's Call to Healing

Geneve had to take a break from her modeling work during this time. She couldn’t fit into her shoes, as we learned above. She had 10kg (roughly 22 lbs) of water weight on her body. As we all know, these symptoms pose challenges!

Her first course of prednisone was two weeks of 60mg followed by a three-month taper. Her proteinuria ceased while on the prednisone, then relapsed with the taper. She began a second round of prednisone and intuitively felt that something was off.

She said, “I was in this fog of doctors are telling me [one thing] versus what I intuitively knew about myself.” 

Geneve began reading health books and adjusting her diet. She cut out gluten and dairy, and went vegan. She postulated that this would help reduce inflammation in her body and hoped that, in turn, also meant reducing kidney inflammation.

Geneve mentioned that she is very intuitive with her body and her mind. While she was working on her diet, she also began to feel a strong urge to be near water. And the universe replied with the perfect adventure: a modeling opportunity in Sydney, Australia.

“This is just what I felt like needed to happen,” she said. “I don’t know where this feeling to go near water happened. But I feel like, looking back, that was my body telling me but at the time I just didn’t know!”

While preparing to embark for Australia, Geneve was in the middle of a lengthy prednisone taper and dependent on the steroid to remain in remission. The morning of the day she was supposed to board an evening flight to Australia – she had this feeling that she’d relapsed. Geneve was packing up her life and moving across the world, but had to stop everything to rush to the doctor.

She explained, “I went to the doctor immediately [who confirmed I] relapsed. I called my mom [saying], ‘I can’t go to Australia! I don’t have a doctor there, no nephrologist, I don’t know what’s going to happen.’ [My mom said], ‘you just need to go.’”

And so, Geneve went! It was a twenty-four hour plane ride to Australia. Her carry-on was stuffed to the brim with prednisone out of precaution in case she couldn’t find a good nephrologist in Australia who would prescribe it to her. When she arrived in Sydney, she found a nephrologist who wanted her to repeat her biopsy and switch from prednisone to heavier-duty immunosuppressants. But Geneve didn’t like this option.

Geneve's Era of Slowing Down

Geneve decided instead to try a prednisone taper one last time that would last a year. This was accompanied by a period of dramatically slowing down, healing her body and soul, and ultimately blossoming into self-actualization.

“I know this is woo woo, but really [Sydney is] where I felt like I finally found myself,” she shared. “I always was a city girl going out, partying and socializing. In Sydney I had three friends, went on nature walks almost daily and swam daily. I would wake up and go to the beach. I just really appreciated slowing down.” 

Geneve, who had never been an outdoorsy person, found herself being called outside constantly. “For some reason I just started hiking and I am not the type of person to go for a hike. I wondered, ‘why do I want to do this right now?’” she said. “I went on so many hikes, laid in the sun and garden; went on so many little walks. I swam in the freezing cold water in the ocean. Everything was very intuitive without me actually knowing [why I was doing what I was doing].”

The food in Sydney was also of incredible quality; better than what she had access to in the cities she had lived in prior. Geneve explained, “I prioritized whole foods: really fresh fruits, vegetables, beans and grains.”

She also adopted a movement practice. She said, “I did lots of yoga, which I had never done before. And even now, I don’t enjoy yoga. But at the time I just loved it! Looking back, it was a very intuitive experience.”

Geneve also found healing in stillness. She shared, “I didn’t go out. I very much embraced the word ‘no’ and I had always been a ‘yes’ person and a people-pleaser. Being able to say ‘no’ and stay in was needed – that silence!”

And, circling back to the introductory paragraph, Geneve took the time to truly be aware of the world around her; to fully absorb the beauty and awe of mother nature. She stated, “At the time, I was in this meditative state. I listened to the birds – Australia has loud, exotic birds. I listened to them and said to myself, ‘I can’t believe I never stopped to listen to the birds before!’”

In summary? 

“I was experiencing life for the first time without all the noise,” she said. “Now I do that in my life. I’ve transformed my life to where I do that whereas before I don’t remember ever doing that.”

And her best advice?

“Even though I was still on prednisone, I was definitely healing myself. That’s when I started to accept the minimal change disease into my life,” she explained. “Before it was kind of like this ‘other thing’ that was going on. [I had a] victim mentality. I was always saying, ‘why is this happening to me? I wasn’t ever unhealthy. I don’t deserve this!’” 

Geneve continued on, stating, “I really accepted it into my life and was like okay I have this going on. I can either be a victim to it or I can take accountability. And I think that was also a turning point. When you accept something into your life, you’re more mindful of what’s going on. It was both a positive to absolutely love living [in Australia] and also a negative because I had this disease. [By accepting the negative], I just felt more balanced within.”

Geneve's Path to Remission

In March of 2020 Geneve decided to fly home to Toronto to be with her family, whom she hadn’t seen in a few years. And she also decided not to refill her prednisone prescription. 

At this time the pandemic was in its early days and Geneve was concerned about being immunocompromised while COVID was going around. Thus, this factored into her decision to discontinue prednisone. During this time as well, in Canada, you could only go to the doctor for emergencies. Geneve had to purchase her own urine protein dip sticks to monitor her proteinuria.

As she finished up her prednisone pills, Geneve recalled obsessively testing her urine for protein after sensing she had had a relapse. She didn’t want it to be true! But unfortunately, she had relapsed while still taking prednisone. 

As of April 2020, Geneve was officially off prednisone and had proteinuria. But healing was still deeply ingrained in her mind! She continued to investigate additional healing modalities that resonated with her and began juicing celery, continuing to live a slower life and, most notably, researching how to heal fear.

Geneve intuitively observed that she always used the word “fear” in her daily interactions and began researching the connection between organs and emotions. Geneve had read how Traditional Chinese medicine correlates the kidneys with fear. Geneve explained, “I started being more mindful about ‘why am I so fearful?’ Where is that emotion coming from, that belief?”

She dove even further into research and books, and began implementing all the healing tactics that she could to live a healthy life and overcome fear. “Looking back now, I definitely healed my nervous system,” she said. “A nervous system I didn’t know needed to be healed!”

While in Toronto, Geneve kept up consistent habits for more than a year. She explained, “I changed my diet, changed my lifestyle and it was just years of work. But work that didn’t feel like work. It felt natural. I felt like my body knew what it needed to do.”

Geneve eventually found a nephrologist in Canada to monitor her proteinuria. This doctor suggested the idea of another biopsy or trying a new medication, but Geneve wasn’t keen on either option. She instead surrendered the need to obsess over her symptoms and the bubbles in the toilet. And she put trust into the journey. “I really tried to just live my life normally,” she said.

All her hard work and faith paid off. On June 20, 2021 Geneve woke up with a light and joyous observation. She knew what her body felt like when she had proteinuria, but that day she simply knew that she was healed. Geneve’s nephrologist ordered another urine test and, sure enough, it came back negative for protein! “It was a surprise to both me and the nephrologist,” she shared. “I remember calling my mom saying my pathology is normal!” 

After three months, Geneve tested her urine again. To her delight, still no protein! Geneve had achieved a nephrotic syndrome remission without the use of conventional treatments. While she had had this inner knowing that this day would eventually come, it still didn’t take away from the immense joy that she felt. She shared, “It was such an incredible feeling! And I used to pray in a non-religious way for my health back because when you are ill, that is the only thing that matters.”

Geneve's Next Chapter

Geneve now lives a fulfilling life characterized by vitality and inner peace. Her miraculous healing journey inspired her to enroll in the Canadian School of Natural Nutrition (CSNN). After two years of school, she now runs her own virtual nutrition practice. She enjoys spending her time learning something new each day about holistic health. She currently prefers to eat a vegetarian diet.

Geneve explained, “I’ve found a really good work/life balance. In London, it was very much ‘the hustle.’”

When asked about her advice to all of us nephrotic syndrome patients out there, Geneve stated, “It is acceptance. Just to be able to accept yourself and this disease into your life. It’s not something that has to define you, just something you have to accept. We are human and things in our life will happen to us. It doesn’t define you. But, how you work it out [is what matters]!”

For amazing health tips and recipes (I can’t get enough of Geneve’s content!), I recommend giving Geneve a follow on Instagram at @genevebenatar or checking out her website, www.genevebenatar.com, to learn more about her offerings as a nutritionist :)