Vivre avec la FSGS
Johnathan Grande, FSGS Warrior
Comme beaucoup de maladies rares, la glomérulosclérose segmentaire focale (FSGS) est pleine de surprises, mais la principale surprise survient souvent au moment du diagnostic.
When Johnathan received his diagnosis, he was in high school, an athlete, and a member of the football/basketball team. It never crossed his mind anything was wrong until his blood tests from his routine yearly physical revealed he had high protein, and a biopsy confirmed he had FSGS. In college, Johnathan rarely had symptoms, so he did not spend time thinking about his kidneys or following up with his kidney specialist. Then, his disease surprised him again, and he passed out while with a group of friends, due to lack of hydration and fatigue. Milder symptoms started to occur dealing with bad fatigue and nausea, which was interfering with his life, which led him to reconnect with his kidney doctor.
Unfortunately, after years of not tracking or paying attention to his condition, blood tests after college revealed his kidney disease had progressed. Johnathan’s incident from when he passed out really made him focus on his health due to the life changes that were occurring. Since, he has changed his lifestyle habits and behaviors focusing on his strict diet, physicality, and mentality. Now, Johnathan is active in sports, coaching 7th and 8th grade basketball, but still has questions about the future, especially whether he will need to start dialysis or undergo a transplant. To deal with the emotional stress of waiting to see whether he gets a donor, and what his life will look like if he does, Johnathan practices yoga and plays basketball. Yoga not only helps him move on emotionally, but the stretching helps him deal with the flashes of flank pain he sometimes endures.
Karen a eu la surprise de prendre soudainement du poids. Elle retenait tellement de liquide qu'elle était extrêmement ballonnée et mal à l'aise. Elle savait que quelque chose n'allait vraiment pas car elle prenait beaucoup de poids - 60 livres - alors qu'elle n'avait aucun appétit et ne pouvait pas manger. Après une visite chez son médecin, qui a effectué des tests et découvert un taux élevé de protéines dans son urine, Karen a été orientée vers un néphrologue, qui a effectué une biopsie rénale pour confirmer qu'elle était atteinte de FSGS.
Après avoir finalement suivi un traitement qui a permis de réduire l'accumulation de liquide, elle a pu perdre entre 40 et 60 livres de liquide. Karen a eu l'impression de reprendre le contrôle de la situation, du moins physiquement.
However, Karen felt like she had a different life than before, and needed to cope with this ‘new normal’. Did she do something wrong to deserve this? As a divorced woman, she was alone, and often felt the need for someone to turn to, and luckily her family was there. She also recognized her need to talk to a trained counselor, so she posted on Facebook groups asking for recommendations for a therapist. She wanted a female black counselor, whom she felt she could relate to, and soon recommendations came in – and Karen found the ideal counselor, who she still sees. Although she gets most of her information from her doctor, she does turn to some Facebook groups and is looking for more support groups that could help her.
Karen, like Johnathan, also experiences severe fatigue at times but lets herself take it easy when it happens. If she can’t do something one day because she can’t get out of bed, so be it. Living with FSGS and dealing with her changed life made her determined to help others, so Karen went for training to become a peer counselor. She is determined to overcome any challenges thrown her way and is always looking for more information to build her knowledge about her condition.
Johnathan et Karen ont tous deux pu continuer à travailler, et ils sont en mesure de travailler à domicile. Pour d'autres personnes atteintes de FSGS, comme Talanda, aller au travail n'est plus une option après son diagnostic. En tant que vendeuse chez Walmart, elle n'avait pas l'énergie nécessaire pour rester debout toute la journée et, face à la menace de contracter le virus, elle a estimé qu'il était préférable pour sa santé de rester à la maison. Elle s'estime chanceuse d'avoir le soutien de son mari et de sa famille. Sa seule crainte, lorsqu'elle s'adapte à la vie avec le SGSS, est de devenir un fardeau pour son mari, ce qu'elle fait de son mieux pour éviter. Elle a réussi à faire face aux symptômes de la FSGS, comme la fatigue, et aux tensions émotionnelles liées à cette maladie. Comme elle le dit : "Pour moi, il est important d'être entourée de ma famille, de ma foi et de mon amour. C'est ce qui me permet de tenir le coup".
