Nephrotic Syndrome | Answering Your Questions

[@ayupinglesenglishstories3734]

Hi Jasmine...It's so good to actually see another young adult also with MCD NS. I'm on about my 20th relapse in the last 20 years. (Diagnosed on my 17th Birthday.) Steroids work brilliantly for me thankfully, but the changes it has done to my body over the years has been a cause of terrible depression for me. The unbelievable weight gain and then loss over months and months has been the trickiest element to deal with. I have trained Brazilian jiujitsu and capoeira since I was young, and so have always tried to stay in good shape, but its massively demoralizing when you spend 'x' amount of time and effort to be healthy, and then be one dipstick away from losing it all again. Then repeating the process almost yearly. Like you I also had a few years completely off everything and in remission. I recently had four years in full remission with no meds, then the summer of 2019 it returned, and again last February, just before the first lockdown. I understand I am super lucky, as many of our fellow nephrotic folks don't respond to steroids or even second and third line treatment, and despite my own relapses I have led a pretty adventurous and happy life, living abroad, becoming a teacher, university etc. It is just nice to hear someone else talk about it. I literally knew nobody who has it until lockdown where I discovered a facebook group, and it was from there that I saw your channel. Anyway keep up the good work and look after yourself. Aaron

[@JasminesJourney]

Hello! Thank you so much for your lovely comment! Oh wow so sorry to hear that but I bet you’re even stronger after every relapse for sure. Yes that’s 100% understandable- Steroids are a strange medication for sure and I am the same ring a professional performer when steroids decides to strip all muscle I’ve worked hard for from dancing etc. But we move and try to build the strength back up slowly but surely ☺️ that’s amazing to hear that. I’ve personally never been medication free as I’ve either been on steroids then always been on Cyclosporin as of 3 years ago. But I was also in along remission too before this recent relapse. Oh wow your life sounds very fulfilled and adventurous for sure! Keep up the positivity! Bless you, thank you so much, never forget you’re not alone. We’re all in this fight together. Stay safe and well. All the best 🙏

[@Mhmd06]

Hi, can you paste the link for this group pls?

[@darshusharma3134]

Does this disease cause pregnancy issues? And what about the blood clots on the legs and are you still on medications?