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Hi. I am new to this group. I wondered if there was anyone out there with Minimal Change Nephrotic Syndrome? I am 53 years old and have had it since 1999.
Sometimes life is completely normal and I am can be medication free for several months, but it always comes back. High blood pressure, cholesterol, fluid retention, brain fog and depression, nausea, protein leaking etc. I am very lucky in that my kidney function goes back to normal when I am in remission, but nine years of steroids have done a fair bit of damage to the rest of me! I think it is usually kids who get this disease after a strep infection but it was not the case with me. It came out of nowhere. I have some friends I talk to in a group based in Canada, called Yaktalk, but no one in Australia.
It is nice to know we are not alone.
Hi Lindy - we are doing some work now to reorganise YAP Space. So anticipate some company soon. Hopefully someone with Minimal Change Nephrotic Syndrome will register so you can exchange information. Cheers from da Kidney Kat
Hi Lindy, am new to the group as well. Its great to ba able to talk and read responses. Ive felt so alone these past few months since being diagnosed with Membaneous Neprapathy (protein leakage). Ive just been told I got to start the steroids. This sounds really scary to me! Im 38 years old. Was in Hospital for 3 weeks with 20kg of fluid and Phenmonia and no one picked it up. I hate taking all these medications I feel like Ia 98 not 38. What damage did the steroids do? And how did you feel when taking them? I feel like Im in remission at the moment cause I feel Ok ( compared to Hospital) other that tired, but have lost the nausea for last few weeks which is great. I feel like I am complaining all the time to my loved ones and I try not to say anything when I feel bad cause they must be sick of it I reckon. Myn to came out of nowhere and I wonder why I got it. Probably to much beer over the years which I trying to stop totally and lose weight and stop smoking! Not successful yet. Do you lead a healthy lifestyle? What do you do?
Releived to talk to others!