Sunday, February 26, 2012

SCwSG, Gracie and Diane Support Rare Disease Day!

Thank you for sharing and caring! 
Cryoglobulinemia Vasculitis is a rare blood disease. Diane has battled Cryo for 22+ years.

Cryoglobulinemia Vasculitis affects blood vessels throughout the body causing thickening, weakening, narrowing and scarring. Abnormal proteins present with cryoglobulinemia are triggered by emotional, physical and mental stressors including but not limited to: standing, cool breezes, holding cold things, and air conditioning which causes the blood to turn to a jelly like solid.

Symptoms may include difficulty breathing, tiredness, dizzy spells, weakness, glomerulonephritis Kidney disease), joint and muscle pain, purpura, Raynaud's, urticaria, Cholinergic "Heat" Urticaria, hives, rashes, slow healing ulcerated sores, organ damage, skin death, amputations, neuropathy, swelling, bruising, digestion issues and many overlapping conditions including hepatitis, multiple myeloma, and ulcerative colitis. Flare up prevention is key but not always possible unless the suffer stays indoors limiting all variables but even then is not guaranteed an acute free life. The support of family and friends is monumental with this vicious and painful disease.
The Cryoglobulinemia Vasculitis Education and Awareness Team whose Team Leader is Rochelle Ray created the worlds first International Cryo medical Organization.

CVO is an outreach of Second Chance with Saving Grace, Inc. SCwSG is a 501(c)(3) nonprofit organization whose mission is to help hurting people and animals. Under the ministry's Cryoglobulinemia Vasculitis Education and Awareness Department, CVO was established to unite patients and the medical community in managing and drawing attention to this rare blood disease. CVO's goal is to create a strong and courageous voice to educate, enrich and encourage patients and to champion advocacy programs regarding the care, treatment, research, diagnosis and use of service dogs for those suffering from cryoglobulinemia and associated conditions.

Join our CVO Facebook support group
Diane was featured on Oprah's OWN and Discovery Health's Mystery Diagnosis TV show, "The Woman Whose Legs Turn Black".

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