Christopher Windisch is an FSGS patient living in the Southern California area. His leadership has helped secure not only a great sense of support and friendship within the local kidney community, but his ingenuity and creativity constantly pushes him to think about what’s next. Christopher sits on NephCure’s Board of Directors. You can contact him directly at socal@nephcurevolunteer.org.

What’s your personal connection to NephCure?

I was diagnosed with FSGS myself, and I first became involved with the organization in 2010. I  sponsored walks in my area at first.

What makes you committed to volunteering with NephCure?

I have a constant hope that we will one day find new therapies. I also hope to leverage my leadership to build a sustainable NephCure community in the Southern California area.

What projects are you working on right now?

I’m mainly focusing on fundraising at the moment. I sit on NephCure’s Board of Directors so I am also involved with things there as well. I always feel like I should be doing more!

NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here.

Meet Dallas Regional Leader, Tiffany Lievanos whose son suffers from Minimal Change Disease. Learn how she is working to help kidney kids understand the importance of their diet and how she is empowering other volunteers through the local events in her community. You can connect directly with Tiffany at nephcuredallas@nephcurevolunteer.org.

What’s your personal connection to NephCure?

My now 3 year old son, Owen, was diagnosed with Nephrotic Syndrome/MCD two years ago. I was searching for answers and more information about the rare disease that shook my world. I came across a Facebook group for parents of kids with Nephrotic Syndrome and several families pointed me to NephCure. I reached out and quickly became a part of the NephCure family. I started listening in on calls and once I felt comfortable, I started getting more involved. Before I knew it I was leading the NephCure community here in Dallas. It has been such a joy to lead, follow, and connect with other families through NephCure.

Why do you volunteer with NephCure?

I volunteer with NephCure because it makes me feel like I am being proactive in my son’s fight against kidney disease. When it comes to living with a rare disease, there are so many unknowns and that constant feeling of “I have to do something” from a parent’s point of view. We channel a sense of a protective nature in order to protect our child from this disease and the course of treatments that comes with it. I suppose it’s the mama bear in me that wants a little control—a little control that can certainly go along way as we make strides in awareness and better treatments.

When I started volunteering it pulled me out of a dark place of feeling alone and unheard. Volunteering was my outlet, a chance to be a voice, to create a hope for other patient families, and to be the support that I once needed and still need to this day. What keeps me committed, other than the fact that I won’t stop until there is a cure for my son, is the empowerment and love that comes with it and shines through it!

Volunteering was a big part of my upbringing and the impact that it had on me as a child which was making a difference in other people’s lives has never left me. I love to help others! Being a part of the NephCure family is such a gift to me and my own family. Being a NephCure leader is a superpower that I know I can utilize and make a difference!

What projects are you working on right now? How do they make you feel?

I am currently working on a couple projects at the moment. While community development is my main focus, I have started working on sub-projects to capture my patient families engagement and hope to provide the families and kidney kids with supportive tools that bring us all together as a community.

We recently launched Kooking Kidney Friendly with Keyaira and Sous Chefs a kids virtual cooking class. I hope this becomes a new way for patient families to share low sodium recipes with each other and a fun way to get our kidney kids included in our community. I feel like its important for our kids to grow up knowing and truly understanding their dietary needs, so that they can make conscious meal choices themselves and feel good about it!

Looking ahead, I have a Dallas Pig Jig scheduled for October 2021, and currently brainstorming a formal dinner party for early 2021 should Covid allow. Planning these events makes me feel productive. Event planning has always been something I have enjoyed and knowing its to make a difference in my child’s future makes it all the more empowering.

NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here. 

Kevin Mott is an FSGS patient living in the Chicago area. Early on, he had a tough time finding doctors who would take his symptoms seriously. He saw four medical professionals before finding his nephrologist who diagnosed him properly. Kevin has also received a kidney transplant in 2017. He is a member of NephCure’s Board of Directors. You can connect directly with Kevin at illinois@nephcurevolunteer.org.

What’s your personal connection to NephCure?

I discovered the NephCure message board after my FSGS diagnosis years ago. I found it to be a helpful source of information. After some time volunteering with the organization, I was invited to sit on the Board of Directors.

Why do you volunteer with NephCure?

I volunteer with NephCure because I want to be supportive of the entire community dealing with rare kidney diseases—patients, parents, family, loved ones, doctors, caregivers, researchers, etc. I want to do what I can to help others on this journey have positive outcomes.

What projects are you working on right now?

Currently, I am scheduled to speak to two groups whom I would not have met without being involved with NephCure. In particular, we are discussing issues of diversity and inclusion as it relates to the experience of dealing with rare kidney disease. It makes me very proud to advocate for all patients, but especially African American men who are disproportionately affected.

 

NephCure is local to you. To learn more and get involved with your regional volunteer community, please click here. 

Juli Millas is an FSGS patient living in the Central Florida area, who was first diagnosed in July 2002. She has built a strong sense of community within her region and is passionate about supporting others with rare protein-spilling kidney diseases. While she typically meets up with other local families at Tampa Pig Jig every year, she’s getting creative and adapting due to the pandemic cancelling the 2020 event. Learn what she has planned instead for her community!

What’s your personal connection to NephCure?

I discovered NephCure about seven years ago after attending the Tampa Pig Jig. As an FSGS patient, I couldn’t believe it; I had found a community of people just like me that I had no idea existed! It was nirvana! I found my tribe! When NephCure was looking for volunteers, I knew I had to get involved and I jumped at the opportunity to be a part of them. Being the patient engagement and support volunteer, as well as the regional leader, for Central Florida brings me such joy, pride and satisfaction. I know that I’m a part of something that is making a difference for Nephrotic Syndrome patients.

Why do you volunteer with NephCure?

I’m committed to volunteering for NephCure because I don’t want anyone with Nephrotic Syndrome to ever feel as desperate, lonely, and isolated as I did when I first got sick. I want everyone to know that NephCure is here for them with information, support, and most of all community!

What projects are you working on right now?

The two projects I’m currently working on came to fruition because of the Tampa Pig Jig being cancelled due to COVID-19 this year. Pig Jig is a huge fundraiser for NephCure and it’s a place where patient and patient families meet up every year. It just made sense to do a picnic and fundraiser. So, I am planning a one for the patients and patient families who normally meet up at Pig Jig. And since the folks at Pig Jig will match our donations up to $100,000, I am doing a small fundraiser and I am calling it “The Pig Jig Initiative.”

In recent years, we have seen Patient-Centered Outcomes, also known as Patient-Reported Outcomes (PROs), be implemented more regularly, specifically in the drug development and approval process. In fact, the Food and Drug Administration (FDA) created a Patient-Focused Drug Development Program specifically aimed at learning about how diseases impact patients’ lives and what an ideal treatment would look like from both patient and caregivers’ point of view. NephCure and our Voice of Patient volunteers continually invest their time to participate in various PRO projects, including Externally-Led Patient-Focused Drug Development Meetings with the FDA, patient and caregiver interviews, panels, and advisory boards with industry partners. These projects have led outside stakeholders towards developing deeper insight into patient priorities and have even played a part in making clinical trial protocols more patient-friendly.

Through daily interactions with glomerular disease patients and caregivers, NephCure consistently sees one very concerning trend. Patients don’t always understand, and many nephrologists aren’t consistently explaining, the correlation between proteinuria and decreased kidney function. The article in the May 2020 edition of the Clinical Journal of the American Society of Nephrology, “Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers” clearly confirms this concern. The top 3 most important outcomes among patients include:

1. Kidney function
2. Mortality
3. The need for dialysis or kidney transplant.

However, patients’ consideration of proteinuria ranks twenty-third in priority.

Over time, chronic proteinuria leads to kidney failure.^{1, 2} Proteinuria results from a dysfunction in the filtering units of the kidney. If a medication can treat that dysfunction, protein spilling into the urine will stop and the filtering units of the kidney (or glomeruli) will remain healthy. However, if protein continues to spill, the glomeruli will begin to scar, causing permanent damage and eventually a reduction in kidney function.

In our professional capacity here at NephCure, the “home” for all individuals who are affected by primary protein-spilling kidney diseases, we have heard too many firsthand accounts of adult patients who have been diagnosed with glomerular disease and whose nephrologist does not treat the proteinuria. Instead, tragically, these patients’ labs are monitored once or twice a year, and they are told to come back when it’s time for dialysis and/or transplant.

NephCure is working to change this practice by educating both the nephrology community and patient families that the number one treatment goal of any glomerular disease should be to stop proteinuria or reduce it as much as possible, which will in turn slow down the progression of the kidney disease and hopefully, in some cases, prevent the need for dialysis and/or transplant.

To that end, we have developed a new patient-focused brochure aimed at educating newly-diagnosed patients and families about the importance of reducing proteinuria in order to maintain their kidney function. We are seeking a collaboration with the broader nephrology community to distribute these at point of care and help NephCure provide support and resources to the primary glomerular disease population.

If you are interested in supporting us in this endeavor, you can request patient materials here. Thank you for your interest in helping us reduce proteinuria, save kidneys, and save lives.

Kelly Helm
Assistant Director, Patient Advocacy

 

 

 

¹ Troost JP, Trachtman H, Spino C, et al. Proteinuria Reduction and Kidney Survival in Focal Segmental Glomerulosclerosis [published online ahead of print, 2020 Jul 23]. Am J Kidney Dis. 2020;S0272-6386(20)30846-5. doi:10.1053/j.ajkd.2020.04.014 https://www.ajkd.org/article/S0272-6386(20)30846-5/fulltext
² Troost JP, Trachtman H, Nachman PH, et al. An Outcomes-Based Definition of Proteinuria Remission in Focal Segmental Glomerulosclerosis. Clin J Am Soc Nephrol. 2018;13(3):414-421. doi:10.2215/CJN.04780517 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5967666/

While the past few months have brought a great deal of confusion, pain, and discomfort to the entire world, we understand the thirst for information is just as prevalent now as it was at the start of the COVID-19 pandemic.

As new research is coming out and guidelines are seemingly changing every day, NephCure is here to help you and other patients with protein-spilling kidney diseases navigate the unknown. We continue to advise you to consult with your physician to design your own protection plan, as every patient’s situation is unique.

No matter your age, if you have chronic kidney disease at any stage or have received an organ transplant, the CDC has clearly outlined and our NephCure Specialists agree that you are at an increased risk for complications from the COVID-19 virus.

We recognize that while your physical health is important, your mental, social, and financial health are also a priority. We encourage you to talk to your doctor, family, and support system to devise a plan you feel comfortable with as you decide when and how to re-enter society.

In the words of Dr. Anthony Fauci, “If it looks like you’re overreacting, you’re probably doing the right thing.” Ultimately, until a vaccine is found, we urge you to follow all precautionary steps recommended by the CDC to decrease your chance of getting COVID-19 infection.

We are in regular communication with our NephCure Specialists to help find the answers you need. We will keep you updated as we receive new information in the coming weeks and months.

As you develop your protection plan, here are some key points to remember:

• Consult with your personal nephrologist and family to create a plan that is right for you.

• Review the most current guidelines from the CDC.

• Your risk may vary depending on the community spread within your region. Search for your county using this map and check with your local health department for information relevant to your location.

This statement was prepared with input from NephCure Specialists:

Ambarish Athavale, MBBS, MD
Lawrence Holzman, MD
Elaine Kamil, MD
Ali Poyan Mehr, MD

“When I was 10 years old, I remember being at a family gathering and feeling absolutely horrible. For the life of me, I couldn’t figure out why I wasn’t feeling well, but I just wanted to feel better. The first sign that I noticed as a ten-year-old little girl was the puffiness around my eyes.

My parents started treatment with allergy medications for approximately a week, but as the days progressed, I began to feel worse. I noticed swelling all over my body, and I also noticed that I couldn’t urinate as much as I usually would. My mother then took me to my pediatrician; I still can picture the puzzled look upon her face when she examined me. She explained to my mother that this was far beyond allergies, and that she should take me to Le Bonheur Children’s Hospital in downtown Memphis.

After seemingly endless tests and blood and urine samples, one of the pediatric nephrologists came in and explained I had Nephrotic Syndrome.

He told us that this was a very rare disease and that I would need a kidney biopsy to determine what form I had. As a little girl, I had no clue what any of this meant.

The doctor made sure to immediately start me on a high dose of Prednisone (steroids) and Lasix (water pills) to help my kidneys get into remission and drain some of the fluid out of my body. The Lasix worked—I was up the majority of the night urinating!

The next day, I was scheduled to have my kidney biopsy. I was terrified—all I could think of was the huge needle going into my back. As the time drew nearer, my heart felt as if it was about to explode through my chest. Teddy bear in hand, I was taken back to the operating room.

The doctor told me to relax and that I was going to be given some “happy medicine.” The next thing I knew, I woke up back in my hospital room. I was in a bit of pain, but it wasn’t as bad as I had imagined.

After being in the hospital for almost five days, I was still receiving steroids daily. I began to notice my appetite increasing, and I later learned that this was one of the common side effects of Prednisone.

A few more days went by, we discovered I had Minimal Change Disease. Nephrotic Syndrome can be a very tricky disease, because everyone is different, and we all respond to medications differently. For me, the steroids were a go! I was able to take the high-dose steroids partnered with blood pressure medications (due to the steroids increasing my blood pressure as another side effect) and Lasix for the fluid.

After being in the hospital for a month and a half, I was finally able to go home and continue my treatment. I was so happy to finally be going home and going back to normal. Little did I know, this was only the beginning.

Fast forward to my sophomore year of high school. I remember being at after school band practice and being in so much pain. My upper back was hurting me on the left side, and I was very short of breath. I managed to get through the entire practice, but I knew something wasn’t right. I got home that night and I didn’t even want to eat; I sat straight up the entire night, just breathing. I remember crying all alone, thinking “I don’t know what this is, but I need to seek some kind of help.”

My mom took me to the emergency room the following day, and they told me that I had pneumonia. They didn’t check anything concerning my disease at all and sent me home with absolutely nothing. When we got home, I still couldn’t even hold down water!

My mother had had enough and called my father from out of town to take me back to the hospital in Memphis for another opinion. They rushed me to the back and began testing immediately. One test I couldn’t even do, because it required me to lie down flat, and I was in too much pain.

I cried all the way there and while we were there. I really broke down when a team of doctors came swarming into the room, asking my father to leave and saying that they had to start treatment right away because my case was very severe. I was only 15 at the time.

I remember hearing the words ‘pulmonary embolism.’ I was puzzled, but later found out that I had a blood clot in my left lung.

They had to begin treatment right away because this was life-threatening. I was placed on a ventilator for about a week, because one day I was trying to get up and blacked out.

There’s not much more that I remember about that experience, but the doctors told my parents that I was very lucky to be alive. Looking back, I am beyond grateful and I understand my purpose.

More time has passed. I am now 22 years old, and I look back at all of the experiences that I have had with this disease—the good and the bad. It may sound crazy, but I wouldn’t change anything that has happened to me. Having Nephrotic Syndrome has not only helped me to grow into the person I am, but it’s also helped me to appreciate life. I know from experience this disease is NOT easy at all; it can be painful and take a huge toll on you and those around you mentally, physically and emotionally.

Often times people assume that just because you may be in remission or back to normal physically, you must also be okay mentally and emotionally. But I’ve battled with depression because I felt as if I wasn’t normal.

I’ve had to miss tons of school days, my parents have had to miss work, I’ve had to try different medications through trial-and-error, I’ve had to give myself blood-thinner injections, and recently I’ve had to start Rituxan infusions—this has been a rollercoaster.

Living with this disease is very hard because you always have that “what if,” or that fear that you’ll relapse and have to go through it all again.

It’s a shame to say, but I’ve had doctors not even know how to treat me properly, and this is one of many issues that needs to be highlighted. This is why I am taking a stand: to be a voice to help others who may not feel comfortable sharing their stories. Hopefully me taking this stand inspires so many others to share their stories as well.

I hope whoever reads this finds some kind of positive message and holds on to that for hope. We are all in this together! A saying that I came up with myself and live by is this:

“While we all have something ugly that we go through, we must find the beauty in it and allow it to shape us into the person we are destined to be in life.”

So, no matter what you may be going through, just remember that we all have something ugly, but it’s up to us to bring out the beauty. What’s the beauty in your story?”

– written by Keyaira Sanders