C1q nephropathy

(Topic from archives: Originally posted 14:20:07 07:59:54 08/09/2003)

My niece has recently been diagnosed with C1q nephropathy. The Urologist is not offering much information at this time. We would like to be proactive with this and wondered if anyone has any experience with this disease. Thanks for your help.

You might want to ask to speak to a nephrologist. A nephrologist specializes in diseases of the kidneys. These are some questions I'd ask:
1) What does this diagnosis mean in layman's terms?
2) What is the treatment and how successful is it?
3) What is the course of illness for someone with C1q nephropathy and how will it affect length and quality fo life?
4) What causes/prevents this disease?
5) Is it heriditary?
6) What other conditions go along with this diagnosis (repeat #2-5)?

I looked for patient education resources on this specific condition and didn't find any. I found something on minimal change disease (C1q nephropathy apprently is one of three times types of MCD). This looks like it was written for professionals: http://author.emedicine.com/MED/topic1483.htm

You might want to print this, read it, and show it to your doctor when you ask your questions.

I'm going to be 22 in December. I found out I had it when I was 15. They had even less Information when I was diagnosed. I was actually hoping you could possibly send me any info you might have please send it to me. My e-mail address is: princessbeowolf2@AOL.com. Thank you for your time.
Sincerely,
Misty Miller

Although we don't have anything specific on this particular diagnosis, Life Options (http://www.lifeoptions.org) has several booklets on living with kidney disease, all of which are available online. Look for "free materials" to read descriptions of the booklets. Some are available in print and there is a link to the order form on the free materials page.

You might also find information that will help you on our Kidney School (http://www.kidneyschool.org) web site. You can pick and choose from a number of educational topics there. This web site is interactive, taking your answers and giving you information specific to your case. No information about you is stored on this web site.

There are a number of other organizations that have free or low cost materials on kidney disease. Check out the links page for topics and follow the links to the different organization web sites.

[ZachAlex]

[quote="Deb C"](Topic from archives: Originally posted 14:20:07 07:59:54 08/09/2003)

My niece has recently been diagnosed with C1q nephropathy. The Urologist is not offering much information at this time. We would like to be proactive with this and wondered if anyone has any experience with this disease. Thanks for your help.[/quote
My grandson has this , have you learned anything about this? Thankyou Syl H

[ZachAlex]

Originally Posted by Misty M.

I'm going to be 22 in December. I found out I had it when I was 15. They had even less Information when I was diagnosed. I was actually hoping you could possibly send me any info you might have please send it to me. My e-mail address is: princessbeowolf2@AOL.com. Thank you for your time.
Sincerely,
Misty Miller

Dear Misty My grandson has this. Have you learned anything more about this disease since 2003?? Syl H

[Beth Witten MSW ACSW]

I found a recently published study on C1q nephropathy in children on PubMed (www.ncbi.nlm.nih.gov/entrez/). From this small study, it appears that those children that had nephrotic sydrome (protein in the blood, urine and swelling) were more likely to have kidney failure later than those that didn't have nephrotic syndrome. Here's the abstract of the research:

Lau KK, Gaber LW, Delos Santos NM, Wyatt RJ. C1q nephropathy: features at presentation and outcome. Pediatr Nephrol. 2005 Jun;20(6):744-9. Epub 2005 Apr 13.

Children's Foundation Research Center, Le Bonheur Children's Medical Center, Memphis, TN 38103, USA.

The study population comprised all 20 patients followed since 1990 through December 2004 at the Le Bonheur Children's Medical Center with diagnosis of C1q nephropathy (55% boys; 60% African Americans). All were aged under 18 years at biopsy (mean 11.2 years, 65% aged 11 or over); the youngest presented at age 10 months and progressed to end-stage renal disease at 14 months. None had clinical or laboratory features of systemic lupus erythematosis or membranoproliferative glomerulonephritis. Clinical features assessed at diagnosis were age, gender, blood pressure, history of macroscopic hematuria, urinary protein to creatinine ratio, serum creatinine, estimated glomerular filtration rate, renal histology, and pattern for immunofluorescent reactants. At the time of biopsy 40% had nephrotic syndrome and 30% nephrotic range proteinuria without nephrotic syndrome. Three patients with nephrotic syndrome also had chronic renal insufficiency at diagnosis. The most common histological feature was focal segmental glomerulosclerosis in 40%, but 30% had minimal change lesion. Four patients, all with nephrotic syndrome at diagnosis, progressed to end-stage renal disease. Of the 12 patients not presenting with nephrotic syndrome, none had chronic renal insufficiency at last follow-up. Kidney survival was 94% and 78% at 1 and 5 years, respectively, in all patients and 88% and 49% in those presenting with nephrotic syndrome.

Here's a brochure on childhood nephrotic syndrome:
http://kidney.niddk.nih.gov/kudiseas...drom/index.htm

[ZachAlex]

Originally Posted by ZachAlex

Dear Misty My grandson has this. Have you learned anything more about this disease since 2003?? Syl H

To those out there with C!Q nephropathy. My grandson was put on Ace inhibitors about 7 months ago. It has greatly reduced the protein in his urine and seems to work against C!Q. Hope this is helpful to others Syl H

Originally Posted by Deb C

(Topic from archives: Originally posted 14:20:07 07:59:54 08/09/2003)

My niece has recently been diagnosed with C1q nephropathy. The Urologist is not offering much information at this time. We would like to be proactive with this and wondered if anyone has any experience with this disease. Thanks for your help.

a am scotty ehrhart i am 22 i have had c1q nephropathy since about seven years old i dont know much but i know a little my phone number is 405-422-9018 i live in oklahoma

[DoriSchatell]

Thanks for your willingness to share your experiences, Scotty. I'm sure folks will appreciate that.