Just needing guidance.

[Chelsae123]

I am 18 years old and I was diagnosed with a rare form of kidney disease that i"ve had since birth but they are just now finding. It's FSGS. does anyone else have this? My kidneys are at 45% function.

[kirstie43]

Hi I was diagnosed at 19 with kidney disease , I'm now 46 and I've only got the one kidney now but I can say I have lived a normal life , I was a jockey for a number of years , just don't stress over it , learn to cook so you know what your eating , oh I was born with it , I'm classed as a ckd stage 3 , hope that helps a little

[Chelsae123 in reply to kirstie43]

Thank you. I don't know my stage yet. I go back to my doctor in Tuesday. 

[kirstie43 in reply to Chelsae123]

Well just don't worry to much , good luck . If you need any help let me know .

[aadd4444]

Dear One,  According to my studies in the Internet, there are 56  types of kidney diseases. I think the most important thing is to have a proper diet regarding eating&drinking. Physical activities and jogging are also important.  I,sincerely, pray for you to be cured as soon as possible.

[Capecorp]

My husband and his brother also both have primary FSGS which was picked up when they were children. They are now otherwise healthy middle aged men with careers, wives, kids and lots of happy memories of partying too much through their teens and twenties (I'm pretty sure that's not recommended though!). They both still have their own kidneys and are just beginning to make plans for dialysis/transplant in the next few years. In the meantime they are trying to keep fit, eat well, avoid harmful meds and drink plenty of water and not let it affect their lives too much. It's scary and I'm so sorry you are having to worry about this too. Do what you can to look after yourself - the kidneys do an amazing job of keeping you going, even with very poor function, and treatment for kidney patients is only getting better. Hang in there.