Yesterday morning I had a Doctor appointment and as I was sitting in the waiting area I struck up a conversation with an older gentleman looking lonely. I normally don’t struck up conversations with strangers very easily, but he looked friendly with his fluffy white mustache, and I love senior citizens as a whole, so we started talking about the desert being in bloom and gardening. When I started telling him about my 86 year old dad and his garden in Italy and about my grandparents’ mini-farm they had in the 60s and 70s he got really silent and then blurted out, without warning, how he would “never” go to Europe because of the “muslim” situation. To be honest, I was a little baffled at this comment. I’ve been in Europe as recently as this past summer and I felt actually safer there than I am here all things considered. IRead More →

Women are a swirl of emotions as it is and my husband often tells me how on earth we live longer knowing how conflicted we are inside all the time. We are. We are emotional bags and this sort of experience is like a tornado of emotions. Forget tornado, how about a category 5 hurricane? Genetics are hard to explain. Trying to make people understand how my son inherited the disorder when his parents do not have the condition is a challenge. The reason why Recessive Dystrophic EB has the world “recessive” in the name is because this is a recessive gene, a gene that lies dormant unless it’s paired with another recessive gene, so one of them has to decide to “show up”. I can only hope that by sharing this not so glamorous journey, the many doubted and neglected EB sufferers will gain medical recognition of their illnessRead More →

I grew up in Italy, so this whole thing about needing “Medical Insurance” is still a bit baffling to me, even though I’ve lived here 2/3 of my life. The more I learn about Health Care in Italy the more I like it. I can’t help but compare what Insurance Companies put me through, forcing me to declare bankruptcy twice over medical bills they refused to pay, with similar circumstances from friends and family in the old continent. My cousin’s husband who lives in my hometown in Italy, for example, had a stroke late last year. By all accounts it was even worse than what my husband suffered several years ago. But instead of receiving automatic continuous Physical Therapy and help since his stroke, which enabled him to already being able to walk and becoming better and stronger within 4 months with no co-pays, my husband was left to healRead More →

I remember clearly this girl on the right. I was painfully shy. Painfully. So painfully so that in third grade, when asked a question about geography, I didn’t speak because I was afraid to be wrong. I wasn’t wrong, I had studied all day before, but when I was asked this question in front of the class, I froze. My shyness got me an F. I was mostly a quiet child not only because of my shyness, but also because I was taught by various teachers and other people in my life to be quiet. To be less sensitive. How many times my elementary teacher made fun of me for crying? I lost count. I was 11 years old in this picture, taken in the summer of 1975 in my parent’s living room. I had just finished 6th grade. Back then my shyness was at its peak. Most people would sayRead More →

December 1998 – Nicky, 2 years old, showing off his straight ‘new’ hand after surgery. Following is an excerpt from the Book “Butterfly Child”. The hand itself, thanks to my hellish efforts did heal up straight, but for a while there I thought it wouldn’t. As wonderful and caring the hand surgeon was, he just could not comprehend my paranoia in making sure the hand healed straight. The problems with the scar tissue that covered Nicky’s hand before the surgery were many. Scar tissue does not breathe and it has no oil glands, that’s why it looked so bad, it’s very dry and squams constantly. One other big problem with scar tissue is that it does not “grow” like normal skin, hence the fingers and/or toes get “trapped” into that skin impairing the normal development of the hand, and that is why the fingers get pulled back into the palmRead More →

We live in a world that has become overly hateful and judgemental, even plain rude, and to me, it’s a direction that needs to be reversed. If there is an America we need right now is an America that is more kind. More understanding. More willing to give the benefit of the doubt. More willing to try to see the other’s point of view. If we’re not willing to do that, than we need to follow the rule we all learned in preschool: “Treat others the way you want to be treated.” I know people are probably thinking I am talking about politics. I am not. Look, I was not happy with the election results, but I care about my health too much to spend my time badmouthing, name calling or insulting others who don’t think they way I do and becoming this hateful person I am not. So, I just turnedRead More →

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 access to the people and resources you need to help take care of your child. But your child’s disease is rare, and before too long you realize the experts are rare themselves. So, youRead More →