There Was Nothing We Could Do, But Now That Has Changed

by Lou Antosh

Sitting in my office, squinting at a paper entitled: "Remission of relapsing childhood Nephrotic Syndrome with mycophenolate mofetil," I lose focus and look at the sheaf of other complicated medical papers on the table. Like many parents of Nephrotic Syndrome patients, sometimes I numbly stare into space and wonder: "What am I doing? How did we get here?"

Would I have believed it, two years ago, if someone predicted that one day I would spend hours reading medical literature with words such as glomeruloslcerosis and methylprednisolone? Always uncomfortable around physicians and medical settings, I now spend hours around doctors and medical discussions. Forget comfort. Like the other parents my wife and I have met in this journey, Joanne and I will go anywhere and do anything if it can make our daughter well. There are no hypochondriacs in our parent foxholes.

Go anywhere and do anything -- that's what the NephCure Foundation is about and that is why we are a part of it. And we pray that other parents and families -- many of them -- will join with us to become a major force in promoting and funding the vital research that can find a cause and a cure for the kidney disease that is clobbering our kids.

This whole new direction for our family began almost 18 months ago when Christine, our athletic daughter who was about to turn 16, was gearing up for the annual Tri-County swimming championships. While we were visiting our oldest daughter's family in Florida, however, Chrissy began waking each morning with swollen eyelids. By noon or so, the swelling disappeared.

Once we were back home, our primary care doctor prescribed eye drops, figuring the swelling was an allergic reaction. When they didn't work, the doctor ordered some lab work and the preliminary results showed nothing abnormal. It was the least of worries for Chrissy, who focused on the swimming championships. The big meet came and she advanced to the final day, taking first place in the breast stroke consolation race. It was a thrilling, upbeat time.

Like a bad dream, though, the medical problem kept coming back. After more weeks of eyelid swelling, Chrissy awoke one morning with swollen ankles and calves. The next stop: an alleged diagnostic specialist, who spent a few minutes with Chrissy and made his call with an authoritative air of certainty: It was lymphedema, a disorder of the lymphatic system which involved swelling of the limbs. "There is no cure for it," he said bluntly.

We had to use the Internet to find a nearby lymphedema specialist, who examined her, confirmed the diagnosis and prepared us for an overnight hospital stay and the imaging of Chrissy's entire lymph system. Before that happened, though, the primary care doctor called with further test results.

" There is protein in her urine and you probably should see a nephrologist."

And that is how, after three wrong turns, we became regulars at Children's Hospital of Philadelphia, best known as CHOP, a great medical institution where doctors say what doctors everywhere say about Nephrotic Syndrome - "We need more research."

After biopsy, Chrissy was diagnosed with a version of Minimal Change Nephrotic Syndrome (MCNS), which often goes into remission with steroids. Steroids did a lot to Chrissy, but nothing good. In the Fall, she started school and soccer practice, but the "roids" had other plans. She gained weight, felt too tired to even go to school, and sunk into depression. Steroids did not do the job.

Nor did two other drugs that sometimes prove effective in MCNS. One made her hair thin and tired her out. The other pushed up her creatinine level and had to be dropped. But not all drugs proved worthless. One has been protecting her kidney from scarring while we all pull and pray for remission. Another has lowered her cholesterol, which once shot up to 600 when the syndrome first began.

Chrissy is hanging in there. Back in school, except for some bad days when fatigue hits, happy to be around her friends. Bad days upset her and she wants to know what is going on in her body. So do we all.

At one parents' meeting at CHOP, one mother expressed frustration. "I know this is caused by some kind of allergy," she said. "We've put filters in the house, changed the way we live. I don't know what else to do."

Neither did my wife and I, until we heard of the movement to start the NephCure Foundation. This is something we can do. We can spread the word and write letters and ask for funds and keep pushing until the scientists and doctors find more and better ways to treat our kids.

When some of us from NCF attended a recent meeting at the National Institutes of Health in Bethesda, a group of distinguished scientists talked about plans for more clinical trials into the conditions that scar kidneys. About MCNS and FSGS, they said, in effect: "We don't know what causes it, we do not have a cure, and even when some treatments work, we do not know why."

I don't know about you, but I don't think that is good enough for our children.

NephCure aims high. It seeks to persuade Congress to release substantial funds for NIH-sponsored research. It plans to solicit funds from corporations and individuals and let top experts decide what research those funds should support. It wants to encourage more scientists to our research cause. It plans to be a helpful source of information to all patients and families. In short, it wants to make a difference.

We will not rest until the cause and the cure are found.

Our children deserve that.

Please join us.