Unidentified Disease

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

Moderator: administrator

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.
Posts: 16
Joined: Wed Oct 25, 2017 10:54 am

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:)
Live to Fly
Posts: 3406
Joined: Fri Apr 23, 2004 10:21 am
Location: A small vyllage in Ye Olde London Town, An IÆ’land, Planet Earth, The Universe

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
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Unidentified Disease

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

Thank you JMan, I will give that a try
Posts: 16
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
Posts: 16
Joined: Wed Oct 25, 2017 10:54 am

Re: Unidentified Disease

Postby JohnW99 » Sun Aug 26, 2018 7:55 am

Hi Sue

I have sent you a message.

Posts: 16
Joined: Wed Oct 25, 2017 10:54 am

Re: Unidentified Disease

Postby Skm » Sat Sep 01, 2018 10:17 am


I’ve been locked out of my forum account. No idea why so I’ve had to re register.
Any chance you could resend the PM to this new account.

Posts: 3
Joined: Sat Sep 01, 2018 10:13 am

Re: Unidentified Disease

Postby rheaybou » Tue Sep 25, 2018 3:52 pm

Could it be that the condition is just a mutation of Alports that has not been identified? My fault is the only reported mutation and is Alports, it seems that more variations are being found.

Prof Albert Ong at Sheffield University is a genetic kidney disease expert attached to Sheffield Northern General and could be a good source of further information or to asses future risk with yourself, family/children via genetic testing. Of three brothers I am the only on effected, bad luck as the middle child!
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

Posts: 1375
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Unidentified Disease

Postby JohnW99 » Fri Nov 02, 2018 10:42 am

Hi the disease has now been identified as ADTKD-UMOD
Posts: 16
Joined: Wed Oct 25, 2017 10:54 am

Return to The KPG Forum

Who is online

Users browsing this forum: Google [Bot] and 29 guests