| Author | Subject: C1q nephropathy |
| Deb C | Posted At 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. |
| Beth Witten | Re: C1q nephropathy (Currently 0 replies) Posted At 01:13:19 08/10/2003 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. |
| Misty M. | Re: C1q nephropathy (Currently 0 replies) Posted At 20:53:40 09/30/2003 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 |
| Beth Witten | Re: C1q nephropathy (Currently 0 replies) Posted At 22:18:37 10/01/2003 Although we don't have anything specific on this particular diagnosis, Life Options (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 (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. |