I'm doing great. After living through over ten years of deteriorating kidney function, Dan, one of my best friends since the fifth grade, coughed up one of his own and then a brilliant and nimble team of doctors and nurses headed up by Dr. Ben Samstein at Columbia Presbyterian tucked it into my belly, just above my right hip. I'm told my own OEM kidneys, relentlessly attacked by my own immune system all these years, have shriveled to the size of prunes.
That was a year and a half ago and I'm writing this fresh from the gym and feeling wonderful. Weights are Mondays and Thursdays, yoga Wednesdays and Fridays and I'm planning next spring to kayak across Long Island Sound.
Not everyone with Nephrotic Syndrome (NS), especially my, most-aggressive form called FSGS, is so lucky. My dad had it in the 80s, needed several blood transfusions and died of AIDS before they started screening the blood supply for the virus. My daughter had a flare up when she was a toddler but thankfully, a decade later, she's been clear ever since.
NS is a rare disease syndrome, yet it is responsible for approximately 12% of all cases of end-stage renal disease (ESRD) and up to 20% of ESRD in children, at a cost of $4 billion in the U.S. alone. Approximately five out of every 100,000 children are diagnosed with NS every year and 15 out of every 100,000 children are living with it today. The stage after "end stage" is a (shortened) lifespan on dialysis unless you're one of the lucky ones like me to find a donor. And even as well I'm doing I still have to take powerful immunosuppressants twice a day, every day of my life.
NephCure is not just about better treatments. As the name suggests it is hunting for a cure.
Today is NephCure Advocacy Day, when dozens of people like me with NS march on Congress asking for, among other things, an increase in support for the NIH's Office of Rare Disease Research and its funding for the National Institute on Minority Health and Health Disparities. Though NS is by no means exculsively a black disease, FSGS is five times more prevalent among African-Americans (most notably former NBAers Alonzo Mourning and Sean Elliott).
There is a meanness in the nation today. We're broke and scared. It's easy in precarious times to contract on all fronts, hunker down and take care of only your own. But no nation has ever recovered -- let alone prospered -- by withdrawing to the anarchy of every person for themselves. We sink or swim together, help the ones who need it most when they need it most. Families like mine and tens of thousands of others could use your help now.
Follow Trey Ellis on Twitter: www.twitter.com/TreyEllis
Continued good health to you and ur daughter.
God bless
At the least, preventing 90% of dialysis patients from ever reaching end-stage would free up a lot of cadaver kidneys. There'd be no waiting list at all. And no living donors would be needed.
At best, the same treatment that works for diabetic and hypertensive chronic kidney disease will also work for FSGS. The same gene is involved: ACE.
Why don't we live in a dialysis-free world yet? Because nobody in healthcare wants to eliminate a $50 B/yr gravy train in the US alone. Without an offical endorsement, the media won't touch the story. What we have here is another Tuskegee situation, writ large. Details are at: http://www.genomed.com/images/guyot_dec09nl.pdf. On the other hand, contact www.genomed.com if you want to stay off the kidney machine. The Internet makes it possible for the entire public health establishment to fail the public, and the public to still do OK.
@ For some reason a miracle happened, and it just went away and so far have led a normal life so far.