How has USeb changed my life with Epidermolysis Bullosa? Although I was raised to be confident, I still needed that reassurance I could do better than what people saw. I hardly ever met with others with EB, so I often felt alienated from the outside world. I did not feel confident that I would have succeeded by myself; however, I always had the mindset that I would someday. After getting married, I jumped right in experiencing daily responsibilities adults are faced with, but I have always wanted more because deep down I knew I could do more. I am such a free-spirit—always having the desire to travel, soak in, be inspired, but never dreamt I would see that day. My husband and I were gifted the opportunity by dear friends’ to travel to Utah, participating in the first USeb camp back in 2009. We were both overjoyed. It felt like a safe haven where I could be myself—not censor myself, empathize, laugh, cry, sing, hug, and not feel rejected, judged, contagious, or gross. We loved every moment of it. It made me realize how society is programmed into beautified perfection. But really, what does that mean? Having an absolutely perfect body without scars? It is more. I speak for anyone that has a challenge they were born with or recently developed; it does not disable you from pursuing your dreams or bettering the world. We only disable ourselves with the way we think. It is what is inside—the heart and soul.
After the wonderful experience at the USeb camp in 2009, I started going out by myself. I went even beyond that, traveling on an air plane by myself. To many, these are normal easy to-dos, but to me, it is like successfully constructing the most amazing artifact. EB does not define me; it is only part of my charm. I am human.
During the recent ski retreat, I had that doubt come into my mind that I am going to be completely horrid at this! I tried being very active as a child by biking, horseback riding, and I even tried skating! It is has been many years since then so my core has not worked much, sadly. When I saw the morning group of friends that skied with their challenges, and the joy beaming upon their faces after their sessions, it immediately warmed my heart. Most of us chose to do the sit-ski in a bi-ski, which is an amazing creation!
My instructor taught me amazing techniques to help with my balance and lengthening my spine. I’ve never been to a chiropractor, but it felt as if I was readjusted, in a good way. I could feel a huge difference health wise immediately after one session.
The first day of learning, I was uneasy and not as confident, but felt more at ease during the end of my session. I was stoked for my next session being the next day, but the EB had me questioning about going again. Skiing didn’t hurt me at all, but the overall norm of pain at the end of the day came down on me (a typical night for me usually). I changed my way of thinking the night before—rethinking this pain will not defeat me. Because, you know what EB? I just skied down a mountain today!
This nonprofit is near and dear to my heart since I've been on the board since the beginning and I am a person with EB. I was very close to the team of people that made USeb a reality. They believed like I do in the importance of having an organization run by EB people that benefited EB people. EB is a disease that is all encompassing. It effects every single part of your life. It can be debilitating and crippling. Seeing others with EB having the strength to push through the pain and anguish can be very inspiring. Surrounding myself with EB mentors has bettered my life that is why doing it for others is important to me. Having EB mentors has allowed me to graduate university, drive a car, and travel independently just to name a few.
USeb has been able to help improve the quality of lives of many by having camps and helping show other survivors through experience that their lives can be more than just EB. That they can nurture their skills and talents into fruitful lives. We have helped make people's lives more self-reliant by holding writing contest and giving away equipment like a laptop and iPad. We hope to continue doing those things and more in the future.
Review from Guidestar
I'm writing this review from the perspective of a husband that saw the birth of this organization as my late wife, Jamie Diane Gibson Hartley, turned her dream into a reality: to help those struggling with her same disorder become more self-reliant like she had done.
Our organization is unique because I have yet to see an organization that directly serves those who suffer from EB specifically. There are many organizations dedicated to finding a cure for this horrific disorder, but, as of yet, and to my knowledge, our organization is the only one that addresses the current needs of people with EB.
With the right assistance, people with EB can graduate from high school, got to a university, give back to their communities through employment, non-profits, and political activities, get married, and reach out to support the EB community in ways that only they can. I know this because it's what my dear wife did. She was a model to people with severe forms of EB. She showed by example how to achieve your dreams in spite of EB. She helped motivate others out of learned helplessness and depression, grab a hold of hope, and achieve things they never thought possible.
Review from Guidestar