Hello, my name is Paul Martinez, I am 31 years of age and I reside in California. I was diagnosed with RDEB at birth. My life has been put on many time tables by many professionals in the field of medicine, so much so a priest came into my room the day I was born to say my last prayer as I was not expected to live much longer…I did…and so more time tables began for me, such as I would not make it past late teens or early 20’s…I did, and now I’m into my early 30’s.
I have defied many obstacles in my life that many said or I knew they thought I could not do. I did well in High School, went to prom with a beautiful girl, attended college and receiving a degree in Business along with certificates. I also managed to be as independent as RDEB can allow me to be, and by that I mean I have my very own apartment, pay my own bills and so forth. However, my mother is and always has been my rock. If not for her I would not be here today as she always did an amazing job – the best she could when I was a child. Much less was known about EB in the 80’s and 90’s, there were no EB support groups, there were no EB conferences or EB camps, or internet to vent or get tips like there is today for EB families. So my mother, to this day, has always done everything on her own with extreme care and love.
Today she is still my caregiver and comes over daily to help me with bandages, cleanings, cooking meals and such. I could honestly not have my own place if not for her helping me, but having my own place gives me a since of some peace and sanity of the world I live with dealing with RDEB.
I have been through a lot of obstacles in my life from not being able to walk for an entire year due to falling and fracturing my entire femur. Doctors could not and would not risk surgery on me, yet despite the uncertainty I walk fine today, also despite the occasional bad feet days where my feet are messed up badly from wounds.
Growing up as a teenager was the hardest part of my life growing up. As a teenager, it’s an important time for one to know who they are and what they want their future to look like. Anytime in our lives something goes wrong, the one thing we ask ourselves that we have in common, whether the problem is small or big, we ask ourselves “why me?”. Imagine being in my position. I would ask myself that question every single day and it was eating me alive and killing me inside. Despite being accepted by my peers at school, despite hanging with the “cool kids” at school, there was always a huge void in me, I could never do the things they did such as play sports, swim and just dive in the ocean, ride roller coasters, drive a car, and just every day things people take for granted that I never could do.
Despite how brutally painful EB can be at times, I think the worse part is the emotional aspect for a kid or teenager growing up. They have to deal with the obstacles they are facing with EB. As I learned though, it’s important to know sometimes questions such as “why me” can kill us inside faster than the disease can. I had to learn to accept the fact and know what to do with it, and that’s the important part – finding some meaning in life.
I found that meaning spiritually and mentally. I am now a very positive person, and I believe because of my strong mind, it has helped me to be here a little longer. As hard as it can be at times, I no longer fear the uncertainty as my life has always been full of them, but now I fear the will of losing hope and faith, and so I choose to never lose those things.
At this point of my life, a lot is changing in me. My hands are fully webbed and it is getting harder to hold a pen or even a food utensil because of it. I lost a lot of my hair due to wounds on my head that I never got as a child or teenager -not until my mid twenties. I feel my body losing energy with every year that passes. I now get skin cancer checks every 3 months at Stanford University by an entire EB team, and many other things I am dealing with as I age with RDEB.
Yet despite my uncertainties, my will is stronger than ever, my passion to live is stronger than ever, my meaning and purpose of life are stronger than ever, and not all of it has been bad news. I’ve been working on a book called “Turning Pain Into Success – Life in My Blood Stained Shoes” which started out as a therapeutic form of me expressing my thoughts a few years ago, but it has now evolved into something bigger. So much so that Stanford wants to back it and a few doctors would like to write some forwards for it which made me very excited! This book is not only my legacy but I feel strongly that it will help other people not only with EB but all walks of life, that no matter our adversity, we are not liabilities but assets of great value.
In my free time my hobbies include following my favorite sports teams such as the San Fransisco 49ers and San Fransisco Giants, and I enjoy watching boxing and UFC. I also enjoy a good movie or tv series such as Game of Thrones and Sons of Anarchy. My other hobbies include writing and playing video games, and spending time with my family – including my nieces that I cherish.
I am excited for my future despite what comes in my way.
Donations to my PayPal will go to medical supplies that Medi-Cal insurance does not cover that come out of my pocket such as 3M tape rolls, elastic-tube gauze, and also diapers.
April 2015 Update:
Paul recently became the 3rd person ever to receive a stem cell gene skin graph surgery, and the one and only to have the procedure done to the feet. The other recipients had the skin graphs done on their arms, hands, and shoulder areas. Paul is a very mobile person that walks a lot, even with wounds on his feet. The graphs have cut down tremendously on wounds in the graphed areas of his feet. He still gets wounds on his feet where they were not graphed, but that shows that even with max usage, the stem cells are performing very well. So far the results have been very promising for the future of RDEB treatments!