It’s not Political Stuff, it’s Human Being Stuff

Nowadays, everytime I turn around, I hear something on the news on how the life of my child, once again, is an afterthought. The latest one is how the new tax plan passed unanimously by the GOP until the last minute didn’t have the ability to deduct medical expenses. Maybe, for most people, being able to deduct medical expenses is not an issue whatsoever, but I am glad that pressure from the disability community got them to open their eyes. The fight is not over, as there are other things at stake. By reducing revenue by at least $1.5 trillion and increasing the deficit, the “Tax Cuts and Jobs Act” increases the pressure to cut Social Security &Read More

Standing Up For My Son

As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now 14 years old. He ROCKS! He’s totally willing and able to stand up for himself. He often asks me how to deal with so-and-so and comes home from school telling me how he successfully dealt with whatever situation he was confronted with. Nicky however, is a different story. Raising a child with a rare disease is profoundly confusing and complicated. With something like Epidermolysis Bullosa, we are forcedRead More

Rare Disease Day 2017

Today is the international day of Rare Diseases – of course Epidermolysis Bullosa being one of them, it hits close to home. There are about 7,000 rare diseases, affecting 30 million Americans, 300 million people worldwide, but only 5% have treatments, and far fewer have cures. Rare diseases often go undiagnosed, and while a diagnosis per se does not cure the condition, the fear of the unknown is greater. Even when you do get a diagnose, sometimes it’s hard anyways because patients seem to react very differently to treatments. Second guessing becomes a pastime. No one can prepare you for having a rare child. It’s a lonely place to be. A diagnosis will open doors and give you accessRead More

I Can Disagree

I know this is not a popular stance, or maybe it is, but if living with a child (he may be 18 now, but he’s still my child and will always be-and he will always live with me!) with a rare form of Epidermolysis Bullosa has taught me, is that no matter how much a Doctor cares, sometimes he or she can be wrong. I read a book a few years ago about a local mother whose teenage daughter was diagnosed with a rare form of Brain Cancer, which is almost always incurable and impossible to detect before it becomes deadly. The Doctor did everything he could to treat her and by some miracle it looked as if theRead More