Support (Adults)

Hi everyone, Plans are underway for the first NephCure Lunch and Learn Seminar of 2013, which will be held on February 9th, 2012 at the San Francisco State University downtown Campus. This is a great educational opportunity to learn more about the most recent advancements in research and treatment options. If you live in the Central/Northern CA area and would like to attend, please contact Patient Advocate, Charlene Mukarakate at cmukarakate@nephcure.org or call 610-540-0186 x27. It is FREE to attend and a light lunch and refreshments will be provided.

anyone here cured from MCD with nitogen mustard?

Does anyone have any dietary restrictions in addition to these Fab Five? I want to see if I can come up with some interesting recipes. What is your combination of no-no's? 

1. Sodium
2. Potassium
3. Phosphorous
4. Protein
5. Cholesterol

I guess recently I have been in a funk. I am a take charge kind of person. I know what I want, set out to do it, and make it happen. For example, I received my Masters degree at the age of 22 yo without any financial assistance from family or student loans. It's not that I don't face hurdles, I just plan and follow through. My drive has gotten me pretty far, but FSGS has totally put a bigger roadblock than I had anticipated on my course. I can't control or predict how my body will react.

On Thursday night, June 21st, I attended my first Nephcure support meeting and I am excited to attend many more! I met Allyson Martin, the Regional Development Coordinator for New England, who put together a great meet and greet. There was a lot of information shared about research, personal stories and plans for future meetings, Lunch & Learns and Nephcure walks. I learned a lot of valuable information in just one meeting, information that was new to me and helped put some of the missing pieces in my own story into perspective.

Hi BullyBeliever -

Here is a recipe I love and if you can eat tomatoes you may love this too. It is easy and delicious. You can use thighs and portion control it to keep the protein low. The sauce is so good over the rice you won't miss the meat. It freezes really well so you can make double and have more than one meal from the effort. 

Are you a caregiver of a kidney transplant recipient who would like the opportunity to share your experiences?

Looking for others to connect with, any one I guess

Hello, fellow Nephcure friends. I wanted to take a moment and introduce myself. My name is Nathan, I am 32, a photographer and web designer living in SW Florida. I am from New England originally but moved to SW Florida in 2006 and really enjoy the sunshine state. I am new to this site, and this organization. However, I am not new to the world of FSGS. My high school sweetheart and wife, Amber, was diagnosed with FSGS at age 11. We met at age 12, began dating at 16, and married at 23. I witnessed first hand as this evil disease ran its course and waged war on her kidneys.

Hi all, I was recently diagnosed with both IgAN and Minimal Change disease. I am looking for some advice or support. I am not sure what the prognosis is when a person has more than one type of kidney disease. I have been reading up on both and it seems to confuse me even more. My doctor is treating aggressively and I am happy that I have a group (3) or doctors that are working together to treat me. Any words of encouragement or advice is appreciated. Connie