Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

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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.

Monday, December 10, 2012

Today I'm grateful for Pharmaphorum

Do you find blessings in each day? Do you notice the windows and doors that constantly open allowing you the view of new possibilities and do you see the people that cross your path offering you exactly what you need at the moment?

I am blessed to have new eyes to see this awareness due to my many years of illness.  Yes, it is a gift that we all receive when adversity crosses our path of desires, passions and commitments. Clarity becomes the force and focus of survival mode. Within that clarity is a pathway that leads us exactly where we are meant to be.  This reality does not negate what I deal with on any given day: extreme highs and low, uncertainty of treatments options and the fear of not seeing tomorrow’s sun. It has been an arduous journey as a patient living with a rare disease but within the darkness, the light of family, friends, caring strangers and healthcare advocates renew my spirit each day.

For example, on one particular day, when I was crashing below my comfort zone, I received a tweet from @rebecca_aris from pharmaphorum wanting to know if I would be interested in doing an interview.  Not knowing who she was or what we were going to discuss I opened the door, walked in and here is what we said.

I’m grateful for the opportunity to share my story for other rare disease patients and communities. I’m grateful for the network of strangers that allow me to weave my web within social media bringing awareness to the unmet needs of so many people. I am extremely grateful if you will share my story for us.

Thank you pharmaphorum for your work in "Bringing Healthcare Together"

LaughingNana is Grateful for Each Day.

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