Unidentified Disease

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Unidentified Disease

Postby JohnW99 » Wed Oct 25, 2017 11:03 am

Hi my name is John, I suffer from an unidentifed CKD similar to Alports, i inherited it from my father, he, his mother and half of his siblings have died from complications related to the same disease.
It shows itself in middle age and results in scarred kidney tissue and a slow decline in GFR; unusually none of us have protein in our urine.
Does anyone else on here have a similar condition?
My family originate from the Stourbridge/Kingswinford area of the West Midlands, UK.
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Re: Unidentified Disease

Postby JMan » Thu Oct 26, 2017 4:51 pm

Hi John.

This forum is a good place to start. It doesn't sound like something I'm familiar with.

The National Kidney Federation also runs forums on the 'Healthunlocked' site here:

https://healthunlocked.com/search/nkf and there are other communities on health unlocked, and a lot of groups on Facebook as well.

"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
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Re: Unidentified Disease

Postby SKM23435 » Thu Oct 26, 2017 5:37 pm

Hi John,

Yes my history sounds the same as yours.
CKD unspecified. No blood or protein in urine. Gradual renal decline. Reach dialysis in our 50's. Never had biopsy.

As far as I can see my great grandmother, grandmother and 3 out of her 4 children were affected. I have one unaffected cousin and a brother who is unaffected. It looks like a 50% hit rate.

I' think our story is a minority. Id love to know more about it. I have two children aged 24 and 26. I worry about them.


Ps it's fascinating considering the treatments we have had over the years. My grandmother died in 1962 before dialysis was widely available, her 3 children were all transplanted. All transplant patients then got much the same treatment, not the personalised care and drugs we get today. Dialysis diet was very different - lots of cream (no wonder dad died of heart disease!).
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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Re: Unidentified Disease

Postby JohnW99 » Thu Oct 26, 2017 9:13 pm

Thank you JMan, I will give that a try
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Joined: Wed Oct 25, 2017 10:54 am

Re: Unidentified Disease

Postby JohnW99 » Thu Oct 26, 2017 9:17 pm

Thank you Sue, my grandmother died in 1938, not much available in those days. We are about 50/50 too. My father was late diagnosed in 1992 and died from heart damage caused by a high Potassium level.

Hope we can learn more over the next ten years
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Joined: Wed Oct 25, 2017 10:54 am

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