Disclosing CKD: Hi everyone, I need some... - Early CKD Support

Early CKD Support

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Disclosing CKD


Hi everyone, I need some advice. I don’t know if I should disclose my medical condition to my employer. I was recently diagnosed with with CKD. I found out in June I had CKD. I only confided in one colleague. After my biopsy I found out I have Stage IV CKD, just last week. It is caused by IGA Nephropathy and the damage is so extensive I will not benefit from any steroid therapy. There currently is no cure for this condition.

The next step for me is to wait to go into complete kidney failure. When I dialysis I will be referred for Kidney Transplant. I don’t know if I have to disclose this information to my employer. Do I keep it to myself? Do I let my supervisor know? I am worried about how it will affect my employment, I have been employed for over 13 yr. now. I’m not sure I am ok with everyone I work with knowing about my medical condition.

What are the Pro’s and Con’s? And have you been through this? How did you handle it?

So lost and confused...

5 Replies

Honestly, according to HIPPA in the US you are not required to disclose any medical condition to your employer, nor are they allowed to ask.

The Superintendent of my school was called on the carpet for asking and union intervention came about.

You need medical leave, take it. It is up to you as to who you discuss your condition with and to what extent.

As long as you are competently able to do your job and superior is supportive say something

If your place of business requires a doctor's note, then present one and let them know what your dx is.

Again, personal choice.

Please let me know how you are doing and what you decide.

I know that it is not easy.

Hi Socky..

I am dealing with a similar situation.i have recently disclosed my condition to my employer as I am stage 5..i started feeling the effects of anaemia.Very tired and found it difficult coping.i requested a referral to occupational health to do an assessment.im not sure of the outcome as of yet.if you are feeling reasonably ok and can manage your duties you can let your employer know youre going through tests etc..when things advance then it gets a bit difficult.i guess you'll have to let them know.it is your choice at the end of the day.i had to as my company were increasing workload that made things hard.get your doctor on board for support.you dont have to tell your colleagues the full story.just say your having tests etc..they will understand.hope all goes well..

How much your creatinine a, urea, phosphorus,BP

Only control diet can help

Sorry for your condition. As I understood IGA correctly it is a very slow developing and "growing" condition. Of course only you know the status of your condition and your own individual prognosis. If you have been classified stage 4 then obviously it is affecting the filtering capabilities of your kidney (if both are actually having the condition). You have NO responsibility to tell anyone anything. Especially if it is not influencing your work performance. Now if the condition is influencing your performance or currently causing you to avoid certain duties, or do them correctly then you should tell your boss. You do not want them thinking you are doing a bad job when actually it is ill health. You mentioned your coworkers. What obligation do you have to tell them? NONE! And be careful. As in any office, once one person knows, everyone knows. Again IGA is slow. I have read where it even can go away on its own (but I am not sure if this is true for all stages). mayoclinic.org/diseases-con...

You would be 100% insane to disclose your condition to your employer unless absolutely necessary, and even then, I'd think twice. Not only because it could affect how your employer treats you in various situations, but I anticipate the pre-existing condition protections will likely disappear under the Trump administration and Republican congress.

And whoever takes those genetic ancestry (DNA) tests had to be out of their mind if there's even a minuscule chance that your genetic info can be used against you. And if it can be, it WILL be.

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