| Author | Subject: MPGN Type II |
| Michele Leone Stumpf | Posted At 11:16:34 10/16/2003 Hi all! My 4 yr old daughter, Abigail, had sudden kidney failure in July and was diagnosed with Mesangial Proliferative Glomerulonephritis Type II (MPGN Type II). I am finding it very hard to locate other patients with this disease as the drs say it is "very rare". Anyone out there with this disease? I would love to chat! Thank God Abigail is in recovery at the moment due to steroids stimulating the 10% of cells in her kidneys that are not scar tissue. Drs say just a matter of time before she needs a transplant, but I say she will prove them wrong!! Michele from Connecticut |
| Beth Witten | Re: MPGN Type II (Currently 0 replies) Posted At 00:02:23 10/20/2003 I hope that your daughter's treatment is successful. However, even if she doesn't recover kidney function, she can still live a good life on dialysis or with a transplant. You're definitely on the right track by trying to learn as much as you can about your daughter's diagnosis. A word of caution...be sure that the web sites where you look are reputable and up-to-date. When people suggest treatments, even if they seem harmless, ask the doctor first before trying anything new. Here are some reputable web sites that might help her (and you): * MEDLINEplus has a description of the condition, symptoms, prevention, treatment, what to expect, etc. www.nlm.nih.gov/medlineplus/ency/article/000476.htm * KidNeeds includes links to several things, including a University of Iowa survey funded by the National Kidney Foundation of Iowa that researchers hopw will help them learn more about the disease and its treatment www.medicine.uiowa.edu/kidneeds/index.htm * The National Kidney Foundation has a booklet for parents whose children have kidney disease www.kidney.org/general/atoz/content/tipsparents.html * The American Association of Kidney Patients has an online article with tips to help parents of children with kidney disease www.aakp.org/Parents_Night.htm. * NephKids is an online support group for parents of children with kidney disease http://cnserver0.nkf.med.ualberta.ca/nephkids/ * When your daughter is old enough to use a computer, there is a web site for kids with kidney disease called Kids Kare www.kidskare.org I hope that you find these links helpful. |
| Michele Leone Stumpf | Re: MPGN Type II (Currently 0 replies) Posted At 09:08:50 10/20/2003 Thanks Beth for the info! My boss is on hemo dialysis and it helps to speak with him on a daily basis about the disease. I have also found 1 person so far that has MPGN Type II and emailing her back & forth has been great! Thank you! Michele |