Discussion topics

Adults with FSGS

Discuss your experiences with FSGS here.

secondary FSGS

• By lookonthebrightside · New reply yesterday at 11:32 pm
• 8 replies
• Hi, I was just diagnosed today with secondary FSGA. My doctor made it seem like i was lucky i was diagnosed with this and not something else. I have spent the day researching online and i am seeing that ...

All 331 discussions...

Children with FSGS

Discuss your experiences with FSGS here.

Advice please!

• By SHARONIRELAND · New reply yesterday at 9:29 pm
• 4 replies
• Can any please advise me on what will happen next! My son is going into his 8th week of cyclophosphamide treatment, he relapsed 2 weeks ago and thankfully today is his 3rd day negative. He was on prograf ...

All 156 discussions...

Adults with nephrotic syndrome

Discuss your experiences with nephrotic syndrome here.

Prednisone taper and joint pain

• By TxSaphyre · New reply yesterday at 10:34 pm
• 6 replies
• I have read many posts on joint pain in this forum but I didn't find any that really "hit the spot" so to speak. I was on 80 MG of pred every other day for 6 months. My neph scheduled my taper as follows ...

All 196 discussions...

Children with nephrotic syndrome

Discuss your experiences with nephrotic syndrome here.

Having a very very bad day!

• By SpenciesMom · New reply yesterday at 9:53 am
• 18 replies
• I am just so tired of all this NS stuff. Why can't my son be NS free? This is so unfair. My son was diagnosed with nephrotic syndrome in November of 2007. He has been on steroids since then. Currently ...

All 256 discussions...

Genetic testing Q&A

Discuss genetic studies here.

Your Turn - Ask a Question of a Genetic Counselor

• By mwl_NCF · New reply April 14, 2009
• 28 replies
• POST YOUR QUESTIONS IN THIS FORUM! Andrea Uscinski, MS, Genetic Counselor and Research Coordinator at Harvard Institutes of Medicine will respond to your questions related to genetics and genetic testing ...

All discussions...

Clinical trials Q&A

Discuss clinical trials here.

trials with CoQ10

• By mario · New reply October 2, 2009
• 8 replies
• Sakata T, Furuya R, Shimazu T, Odamaki M, Ohkawa S, Kumagai H. Coenzyme Q10 administration suppresses both oxidative and antioxidative markers in hemodialysis patients. Blood Purif. 2008;26(4):371-8 ...

All 7 discussions...

NephCure advocacy

Your involvement is crucial! Advocacy is defined as the process of actively showing support and pleading the cause of another. Send letters and call your local representatives to inform them about your situation and take an active role in shaping public policy and increasing funding for research into these conditions.

FSGS patients in MN or surrounding states

• By kjjohns91 · Posted October 18, 2009
• 0 replies
• We are looking for FSGS patients and families in Minnesota and the surrounding states that would be interested in attending a patient seminar/ lunch and learn in Minneapolis. It sounds like if we can ...

All 12 discussions...

Fundraise for NephCure

There are many ways for you, your family and your friends to become involved and support the NephCure mission. Here are some ideas:

Letters for Life
Start a letter campaign and send letters to your family and friends to tell them that their support is crucial. NephCure provides the tools: sample letters, return envelopes, and brochures!

STEP FORWARD for NephCure
Locate a walk to save kidneys and save lives in your community.

Change for a Cure
How much loose change do you have in your house or car? NephCure's Change for a Cure initiative will place donation boxes next to cash registers and in homes across America.

NephCure Walks in So. Cal. this weekend!

• By CatherineL · Posted November 11, 2009
• 0 replies
• We hope everyone will join us for the NephCure Walks in Santa Monica and Fountain Valley this weekend. It's not too late to join us! Email me at clepone@nephcure.org for more information. Thank you to ...

All 37 discussions...

Help desk

Have a question about using the site? An idea for making it better? Post here and let us know how we can help.

how long on cyclosporine when it does not work anymore? than what????

• By number-48 · New reply yesterday at 5:58 pm
• 12 replies
• my husband was first told he had mcd. now that he has had a number of relapses it is looking more like fsgs. how does anyone know for sure? i know a biopsy but i also know that they have to hit the right ...

All 18 discussions...