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Scleroderma Tri-State Chapter
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The Journey of Rosa Johnson

Rosa Johnson of Rochester, NY shares her story of not only scleroderma, but of her faith, friendship and her strength. With a message that lets others know they are not alone.

Rosa Johnson of Rochester, NY shares her story of not only scleroderma, but of her faith, friendship and her strength. With a message that lets others know they are not alone. 


“Praise be to the Lord, for he has heard my cry for mercy.  The Lord is my strength and my shield; my heart trusts in him, and I am helped.  My heart leaps for joy and I will give thanks to him in song.”  Psalm 28:6-7(NIV) 
I am known to many in the Rochester community as an organizer; as a planner. I enjoy watching ideas flourish into
Rosa Johnsonreality.  I have been producing special events since the age of sixteen. I’m the original program coordinator for the 24-Hour Gospel Extravaganza held for twelve years in the city of Rochester.  The last 24-hour Gospel Extravaganza event was held in 1999. 
However looking back, my health issues intensified shortly after the burn accident.  In the spring of 1998, I was in a fire where I suffered 1st degree burns on my face and 3rd degree on my right hand.  I spent a week in ICU.  The doctors said the angels had to be watching over me that day due to the degree of injuries.  
It was the fall of 2001 before I decided to have a full physical, which lead to various testing which went on for several months. In the summer of 2002, I was diagnosed with a disease I could not even spell or say - scleroderma. Scleroderma is a chronic, often progressive autoimmune disease like rheumatoid arthritis, lupus, and multiple sclerosis in which the body’s immune system attacks its own tissues.  The doctors said there is no cure. 


 I felt my God was not through with me yet; this was a test.  Through this test there would be a testimony,   I immediately said, this is not for me, verses from Psalm started coming to mind.  “I will look to the hills which cometh my help…Hear my cry for mercy as I call to you for help, as I lift up my hands.”  I then came home and called upon several people to form my prayer circle.  The doctor’s were saying my health was going downhill fast and they wanted me to stop work. Therefore I set up an appointment with my pastor Rev. James Cherry, Sr.. He anointed me and he prayed with me and we discussed the various illnesses affecting the women in our church and community. 

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We discussed the importance of educating oneself and being aware of the signs.  I told him I felt the need to talk to others; anyone who would understand what I was going through.  I immediately joined a Scleroderma support group and encouraged them to start a walk to bring awareness to the Rochester community. In June 2013, we will sponsor the 10th “Stepping Out to Cure Scleroderma” walk here in Rochester. To date, we have raised over $250K. In another meeting we discussed how to identify resources to help educate our church family and the Rochester community regarding health issues.After the support group meeting, we agreed to inform others no matter what you are going through. You are not alone - we are women in this together.  So we established a support group that meets on the first Saturday of the month January through May and September through November at the Aenon Baptist Church, to discuss various medical topics.Although I enjoy planning and assisting with various social and Christian-based events, I am also a mother of one daughter, Jannita who I love dearly. She has taken on many of my characteristics as she moves forward in her life. I am passionate about the unity of family and friendship.  I believe in the importance of Sisterhood.   I enjoy having outings with friends, both old and new. I enjoy traveling, exploring life and all it has to offer. I believe in sharing many life experiences and encouraging those around me to think positive and outside the box.  I often say I am on a mission to let others know of the goodness and mercy of our Lord and Savior, Jesus Christ.

I am a mother, I am a daughter, I am a sister, I am a friend, I am a child of God!I am Rosa Johnson!