My Personal Story
By: Kam Redlawsk, 29, Los Angeles, CA
ARM Creative Director(volunteer) and Board Member
Industrial Designer for Mattel Games
HIBM patient since 2000
“If we have no peace, it is because we have forgotten that we belong to each other.”
“To wish you were someone else is to waste the person you are.”
“Like most patients, I lived for years with the uncertainty of what was happening to my body. Because of the rarity of HIBM, doctors were unable to correctly diagnose my condition for years. Greeted by shrugged shoulders and a lack of information, doctors would immediately point me towards a wheelchair. I was basically told I would never meet another patient like myself and that research on my disease would never take place during my lifetime. In addition I was told that I should quit college and my plans for life and give in to a wheelchair. However, this was unacceptable to me and I pursued my dreams of being a designer with full force. I was determined and this determination helped me to eventually find ARM.
Through my interaction with ARM I have had the opportunity to encounter many diverse and inspirational patients. Getting to know the patients as people and hearing their unique stories is truly an honor. Though I live my life as “Kam” and not label myself as disabled there is an immediate familiarity and connection among HIBM patients. I live my life how I determine it and I truly believe our experiences are our greatest asset and pleased to use it to help others. Whenever I am struggling and forced to adapt to the demands of my ever-changing body, I think about all the other patients in the world. My sense of connection and compassion with these patients is deep and truly humbling.
My life has been a transforming journey of experiences and lessons and I am grateful for every moment. However, knowing that HIBM can be cured produces a sense of urgency in me. It is not that I am not willing to accept my disability; it is that I am unwilling to accept that things can’t be different in the future.
I am so honored to be working on ARM's media campaign and as ARM's volunteer Creative Director. I have been inspired by a sense of responsibility towards ARM, HIBM patients and myself. My art flows from my heart, and anytime I need more inspiration I simply look towards other patients like myself. Throughout the creation of ARM's campaign, my focus was to illustrate to the community who we are and what we aspire to be. Patients, and all people, have tremendous potential and the power to make a real difference in this world–disabled or not.
However, ARM's campaign is about spreading awareness as well as finding a cure – both to the medical community and general public. As HIBM is affecting more and more people of all races and backgrounds, it is my hope that the stories of these extraordinary patients might inspire everyone to share the message with friends and loved ones. A cure isn’t simply about solving a medical problem. A cure is just one part of the journey. Working together to help others empowers humanity to embrace the best of itself. I am alive and well and cure or no cure my passion and motivation for life remains the same.”