Bala’s Battle with FSGS August 19, 2021 by Rodrigo Campos-Sánchez At the age of 20 years old, Bala Krishnalal’s life was forever changed by the results of a kidney biopsy. In 2014, after suffering from recurring fevers for two years, Bala Krishnalal was diagnosed with focal segmental glomerulosclerosis (FSGS). Like many FSGS patients, he was the first in his family to ever develop the rare kidney disease. “The doctor I was seeing at the time told me that something was wrong with my kidneys. The doctor needed to do a biopsy test on me to understand what was truly happening to me and what damage was possibly being done also,” Krishnalal said. After his kidney disease diagnosis, started what Krishnalal calls the real challenge — finding a doctor who specializes in rare, protein-spilling kidney diseases. He switched doctors multiple times until he found one who listened to him, was knowledgeable about his rare disease, and ultimately made him feel comfortable. “I changed doctors so many times because they did not treat me as a human being. They all had different opinions and treatment plans, which I did not really appreciate,” Krishnalal said. “But my current doctor is so much better. This person gives me so much confidence and listens to my opinions when we talk about prescriptions.” Although Krishnalal never experienced any swelling, one of the more common symptoms of FSGS, he did have a constant runny nose and frequent flu. He stresses the importance of maintaining a kidney-friendly diet and keeps a close eye on his salt and sugar intake. Krishnalal’s diagnosis came at the height of his college career. Being a student, he was also fully dependent on his parents. While Krishnalal’s mother and father were helping him pay for his education, there was not much left to put toward medical bills. “It affected me mentally and emotionally. The diagnosis only added more to what we thought was already hard to pay for,” Krishnalal said. His father, who worked as a taxi driver for 20 years, had to turn to other family members and close friends to borrow money in order to cover his son’s medical bills. “It was a very rough phase in my life, but with God’s grace, currently we are doing well economically. Things are better since I received a job after college,” Krishnalal added. Since graduating, Krishnalal secured a position as an automotive product certification engineer. Thankfully, FSGS does not affect his work ability. Despite his kidney disease, he feels completely fit, comfortable and enthusiastic at work. Seven years after his diagnosis, Krishnalal sees himself as a fighter, a warrior and as a man with FSGS who still has a million dreams ahead of him. “Now that I am on my own and am thinking about building a family with my significant other, I feel as if I am under a lot of pressure. I have many responsibilities I need to take on and always remember the fact that I do have FSGS no matter where I am,” he said. “It is challenging, yet the day will come when I overcome my disease, and many others will also.” Krishnalal is just weeks away from his wedding on September 10, 2021. “I’m overly excited. It is incredible that someone looked past the fact that I have FSGS. It is all about a positive mindset. One should not worry about their medical conditions yet worry about what is to come the next day. The future will be amazing,” Krishnalal said. Additionally, Krishnalal volunteers as a NephCure advocate. He actively connects with new patients, provides them with educational resources, and helps spread awareness for FSGS and other Nephrotic Syndrome related diseases. “I am here to support anyone in case of anything concerning FSGS. I do reach out to a lot of people, and I understand that the ones I do talk with already know a lot about the disease. Yet, there is still so much that can be done,” Krishnalal said.
¿Que debo saber de síndrome nefrótico?: What should I know about Nephrotic Syndrome? July 20, 2021 by Rodrigo Campos-Sánchez Dr. Sergio Infante Durante nuestro webinar de NephCure U: síndrome nefrótico 101 en español, dirigido por el Dr. Sergio Infante, MD, recibimos varias preguntas de pacientes y cuidadores acerca del síndrome nefrótico en sí, ensayos clínicos, y cómo COVID-19 afecta a aquellos con enfermedades renales raras que derraman proteínas. A continuación, encontrarás las respuestas del Dr. Infante a estas preguntas. Para ver el seminario web completo sobre NephCure U (en español) que explica los fundamentos del síndrome nefrótico y cómo gestionar su atención a través de la era COVID-19, presiona aquí. ¿Cómo puede un paciente inmunosuprimido protegerse contra COVID-19? Uno no solo debe tener cuidado contra el COVID-19. Sino, cualquier otra enfermedad. Con COVID-19, si tenemos que poner un poco más de atención. Uno está más predispuesto a tener el COVID-19 cuando uno está deprimido. Uno debe utilizar doble máscara y tener distancia de las personas. No se sabe cuando uno está infectado o ha recibido la vacuna. ¿Crees que me debo poner la vacuna? Si, y porque la vacuna funciona muy bien. Pero también existen ciertas dosis de medicamentos o ciertos tiempos entre los medicamentos en donde la vacuna no va ser efectiva. El tiempo para colocar la vacuna es muy importante. Es muy importante que uno se comunique con el equipo médico para poder saber cuándo hay que ponerse la vacuna. La vacuna no representa riesgos para personas inmunosuprimidas. ¿Existen ensayos clínicos para pacientes con síndrome nefrótico? Sí y también hay varios estudios que se están siendo desarrollados alrededor del mundo con diferentes terapias. Uno de los propósitos más importantes es disminuir la exposición hacia los esteroides. Eso es porque sabemos los efectos secundarios que existen en los esteroides. En la página de NephCure, existen tipos de recursos y respuestas de cuáles son los estudios que se están desarrollando alrededor del mundo en los grandes centros médicos sobre esta enfermedad. Mi médico no me ha hablado sobre ensayos clínicos. ¿Qué debo hacer? Uno debe utilizar recursos como NephCure. Muchas veces la limitación del tiempo, no nos deja que tengamos una conversación sobre estos tipo de recursos. Es muy importante armar una lista de preguntas. Yo digo esto porque generalmente cuando uno va al médico, se le olvida todo. Cuando existe la oportunidad de hablar con el médico o con alguien del equipo, luego se puede contestar esas preguntas. ¿Deberíamos preguntarle al doctor sobre otro tipo de medicamento para una persona que tiene muchas recaídas? Afortunadamente, tenemos los esteroides. Es uno de los medicamentos más fantásticos que existen. Es capaz de disminuir una gran cantidad de problemas que tenemos. Si tienen efectos secundarios, no hay duda. La utilización de los esteroides es en ciertas ocasiones indispensable porque no tenemos otros recursos. Dependiendo el tipo de enfermedades, si están de buscada por más medicamentos para poder disminuir la utilización de esteroides. Dependiendo del tipo de enfermedad qué hay, pueden existir otro tipos de recursos que podemos utilizar para disminuir la utilización de los esteroides. Pero yo pienso que debemos estar muy agradecidos con que tenemos los esteroides. ¿Existen actividades que las personas con síndrome nefrótico deben evitar, cómo hacer ejercicios o viajar? Mientras que la enfermedad esté activa y que uno tenga una gran cantidad de líquido, uno debe que tener cuidado con la piel, sobre todo. La piel es la barrera más grande que uno tiene. Es el órgano más extenso del cuerpo también. Cuando uno está reteniendo mucho líquido, es frecuente que uno tenga problemas en la piel. Es una de las cosas que uno tiene que evitar. Con viajando, no hay problemas. Poder viajar es importante y también es una parte de nuestras vidas. No hay una contraindicación con viajando. Pero con respecto a los deportes de contacto, hay que tener cuidado con tener traumas y problemas en la piel. During our NephCure U: Síndrome Nefrótico 101 en español webinar, led by Dr. Sergio Infante, MD, we received several questions from patients and caregivers regarding Nephrotic Syndrome itself, clinical trials, and how COVID-19 affects those with rare, protein-spilling kidney diseases. You can find Dr. Infante’s answers to these questions below. To watch the full NephCure U webinar (entirely in Spanish) that explains the basics of Nephrotic Syndrome and how to manage your care through the COVID-19 era, click here. How can an immunosuppressed patient protect oneself against COVID-19? One should not only be careful against COVID-19. But also, with any other disease. With COVID-19, we do have to pay a little more attention. One must double mask and keep distance from people. It is not known when one is infected or has received the vaccine. Do you think I should get the vaccine? Yes, because the vaccine works very well. But there are also certain doses of medicines or certain times in the medicines where the vaccine will not be effective. The time to get the vaccine is very important. It is very important that one contacts one’s health care team to be able to determine when to get the vaccine. The vaccine does not pose a risk to immunosuppressed people. Are there clinical trials for patients with nephrotic syndrome? Yes, and there are also several studies that are being developed around the world with different therapies. One of the most important purposes is to decrease exposure to steroids. That’s because we know the side effects that exist with steroids. On the NephCure’s Kidney Health Gateway webpage, there are types of resources and answers to which studies are being developed around the world in large medical centers about this disease. My doctor has not told me about clinical trials. What should I do? One must use resources like NephCure. Many times, the time limitation does not let us have a conversation about these types of resources. It is important to build a list of questions. I say this because generally when one goes to the doctor, one may forget everything. When there is an opportunity to talk to the doctor or someone on the team, then one can have questions answered. Should we ask the doctor about another type of medication for a person who has a lot of relapses? Fortunately, we have steroids. It is one of the most fantastic medicines available and it can reduce a lot of problems. They have side effects, there is no doubt. Steroid use is sometimes indispensable because we do not have other resources depending on the type of disease. If one is looking for more medicines to be able to decrease steroid use, that is. Depending on the type of disease, there may be other types of resources that can be used to decrease the use of steroids. But I think we should be very grateful that we have steroids. Are there activities that people with Nephrotic Syndrome should avoid, like exercise or travel? If the disease is active and one has a large amount of fluid, one must be careful with the skin. The skin is the largest barrier one has. It is the largest organ of the body as well. When one is holding a lot of fluid, one may often have skin problems. It is one of the things one must avoid. With traveling, there are no problems. Being able to travel is important and is a part of our lives. There is no contraindication with traveling. About contact sports, one must be careful about having traumas and skin problems.