My Maddening Maze began suddenly, when I was just 47, with a plethora of autoimmune diseases. The life I knew changed forever due to chronic debilitating fatigue and pain. Faced with challenges beyond my understanding I began a never ending search for answers.
I was later diagnosed in 2010 with a Rare Disease, Cryoglobulinemia Vasculitis. This disease causes my blood to gel in what appears to be temperatures lower than 70 degrees. When this phenomenon happens it can be life threatening causing organ damage, stroke, eye and vision loss along with a host of other complications. Both my kidneys and heart have been attacked by this uninvited guest and each day brings new challenges both physically and mentally. I live to find answers for myself and others that are afflicted with this rare disease and to find joy in living, whatever the cost.
My passion and purpose is sharing the voice of the patient lost in the Maze and offering the face of Wellness in spite of it all.
A QUICK READInformation on the ULTRA ACT now be addressed in congress. You can easily vote.The Unlocking Lifesaving Treatments for Rare diseases Act of 2012, or ULTRA, H.R. 3737, will improve access to the FDA's Accelerated Approval process for very rare diseases, provide a more predictable regulatory process, bring down development costs, and spur investment in the development of treatments. Additionally, ULTRA requires the FDA to use the best science available, ensuring treatments are safe and effective and reach patients sooner. With the introduction of ULTRA, the EveryLife Foundation will begin to build Congressional support for this important legislation. Most importantly, we thank Representatives Stearns and Towns for their leadership and support of the rare disease community.