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No one has heard of nephrotic syndrome!

Posted , 3 users are following.

wickens
wickens

One of the most difficult things about this illness is that no one has heard of it! I got sympathy due to the heart attack that was caused by my blood clotting but now that my heart is nearly better people think that I'm better too. People say 'how are you', but you can't really launch into a description of your frothy urine so I just say 'OK, thanks'. The growth of my moustache and the abnormale cervical smear results aren't topics to share either. How do others cope with discusing their illness with others?

0 likes, 4 replies

4 Replies

  • nephrotic32
    nephrotic32

    Posted

    hi,im new here.been diagnosed with nephrotic syndrome 2 weeks ago.almost a week on steroids,no change so far except gaining on weight.so depressed,cant walk,cant move by the end of the day....as you saying,no one has heard about it.when people asking,how am i,its hard to tell.usually i`ll show them my big ankles/legs...
    • eric31962
      eric31962 nephrotic32

      Posted

      Never had a day off in 40 years then big feet and legs etc, but on treatment now, life will get better, takes time.

      I was almost incontinent in hospital for five weeks ! No one had any idea until the magic diagnosis. Took only a few days in the kidney unit, I sobbed uncontrollably, I suppose that was depression ? 

      People should see more than big ankles and legs, should see humanity and courage !

      Do what you can, winter is halfway over !

  • rehchandan
    rehchandan wickens

    Posted

    Its tough yea, i never made anyfriends for 19 years of my life. ive had NS  since i was 17 months old. i grew up with judgements on my weight and such. but as i got to college i lost over 40 pounds, and at 133 i feel great and i am pursuing my dreams of becoming a forensic scientist and working csi's. to help channel  my doubts i meditate. it works. i use to swell massively. but i was put on every other day prednisone of 30mg. so i have 5 years left of it and then i hope to grow out of NS. having NS is diffuclt to a point that no one else understands the days where sometime you jsut hate your life. but think about the less fortunate,
  • eric31962
    eric31962 wickens

    Posted

    There must be thousands of medical conditions no-one has ever heard of.?

    I was in hospital for five weeks and not getting better, just worse. 

    They sent me to a kidney unit, took them 3 hours or less to find a reason, three days to start treatment. Of course hindsight is a wonderful thing !

    Three weeks of dialysis (grim)

    I now feel much better and on 20mgs of prednisolone (was on 15 mgs!)

    Not perfect, can't even do, one press-up, making love = making laughter !

    I can drive, help people worse off than me, life is worth living!

    Life will get better, XXX

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