Nephrotic Syndrome Seminar

When Ethan was diagnosed with Nephrotic Syndrome, I made it my mission to find as much information as I could on his condition. I came across a U.S. Foundation called "Nephcure". Their mission is to support research, seeking the cause of Nephrotic Syndrome and FSGS. To improve treatment and help find a cure, as well as providing support for families dealing with these conditions. Since they are based out of the U.S. there have been no events or seminars here in Canada. I had always wanted to attend one of their seminars, so I was very excited to learn they were finally coming to Canada. Yesterday, Jeff and I headed out to Vancouver for an afternoon of learning. 

Before the seminar started, they asked us to introduce ourselves and share how old our child was, age of diagnosis, what treatment options we had tried and how our child was doing now. There were only 15 families in attendance that day, but we could relate to every single one them. I had to hold back the tears as the stories they were telling matched so closely my own. Ethan was the youngest of all the children to be diagnosed and he was the 2nd child to currently be in remission. All of the children had been on prednisone, had become steroid dependent and are now on their 2nd and 3rd chemotherapy drugs. I am acutely aware of how much worse Ethan could be doing and how so many families are still suffering, while we are celebrating 11 months of remission. 

The first doctor talked about the role that genetics play in Nephrotic Syndrome. He told us that Nephrotic Syndrome is caused by a defect in the Kidney filters, causing an abnormal immune response. They have also discovered that these children have a defective gene. Out of 30 billion cells, they are beginning to narrow it down to around 900,000, that could possibly cause Nephrotic Syndrome. Some interesting facts for you, 80% of N.S. are due to unknown causes. Other possible causes are infections, allergies, heavy metal exposure and drugs. Our ears perked up at the mention of allergies, as Ethan has many things he reacts to, including foods, pollens, dust, grasses and animals. Jeff asked if Ethan was exposed to these allergens, could it cause him to relapse. The answer was, YES!!! We had already been told that from two other doctors, but it was good to have it confirmed once again. 

We also heard about the treatment options and the need for research. So much has yet to be discovered and this valuable information will help the doctors treat these children and hopefully one day find a cure. 

There is so much more I could say but I will save it for another post!