March is National Kidney Month March 1, 2021 by Lauren Eva In celebration and recognition of National Kidney Month, we’re devoting this period to sharing stories, research news, and educational opportunities specifically for communities of color and other diverse and underrepresented groups who are affected by rare, protein-spilling kidney diseases. Our focus now and always is on keeping kidneys healthy for all the members of our rare disease community. Please read our recent press release on the launch of our Health Equity Initiative, in partnership with HEAL Collaborative. Don’t miss these upcoming events: Thursday, March 4 at 7pm ET: “Rare Kidney Disease Requires Rare Expertise” – In partnership with Black Health Matters and with support from Travere Therapeutics Thursday, March 25 at 7pm ET: “Living Your Best Life with FSGS Kidney Disease” – In partnership with Black Health Matters and with support from Travere Therapeutics Check out some patient stories: Aries Merritt – Overcoming Hurdles Briana’s Journey with FSGS Finding the Beauty in Kidney Disease: Keyaira’s Story Fourth Doctor is the Charm: Kevin’s Journey to the Correct Diagnosis Sabrina’s Journey with Minimal Change Disease Stephanie’s Journey with Nephrotic Syndrome Get up to speed on the latest education, research, and commentary: An Inside Look: Vertex’s Study in APOL1-FSGS APOL1 FSGS Kidney Disease Fact Sheet Ask the Expert: Dr. Rasheed Gbadegesin The Genetic FSGS Discovery Trailblazing Possible Kidney Disease Treatment NephCure U: APOL1 with Dr. Jeffrey Kopp Make sure to visit our Facebook page to see more resources and information, including our “The Doctor is In” social media campaign.
Brenda L. Butler says March 11, 2021 at 12:10 am I was diagnosed with FSGS in 2013. I had my first pregnancy just 7 years earlier and was a happy first time mom of beautiful twin boys. Seven years later while at work, I noticed alot of swelling around my ankles and feet not I thought that it was just from sitting long hours at a desk so I didnt go to the doctors. Also I slept alot even on public. Anyway, one day i went to my Gynecologist for my annual check up. After during the uri e lab, I was told to rush to a Nephrologist that they recommended. I was diagnosed with FSGS and was put on Cellcept which took my appetite and my hair, th wer n I was prescribed 100 mg of prednisone a day we hach drove me batty. Lastly, I was put on immunodepressant med that kept me stable for 4 years. Th as n it stopped working. I am down to 10% left of my filtration, have a fistula in my arm, on one kidney list and waiting to be put on another. I’m not on Dialysis and I’m trusting God that I will get a kidney or as miracle. I jam a single mom of 15 yr old twins and I have to be healthy