Tuesday, March 6, 2012

SCwSG, CVO, Gracie & Diane Support Multiple Myeloma Awareness Month

March is Multiple Myeloma Awareness Month. Diane's Mother died, February 18, 2010, after suffering over 4 years with advanced Multiple Myeloma. 

Sam Walton
Peter Boyle
Roy Scheider
Geraldine Ferraro 
Ann Landers
Mark Lenard
B.J. Kennedy

Multiple Myeloma represents approximately 1% of all cancers and 2% of all cancer deaths with a peak age onset of 65 to 70 years of age. It involves a type of white blood cell normally responsible for the production of antibodies. This bone marrow cancer of plasma cells causes abnormal cell accumulation in bones, where they cause bone lesions/tumors and interfere with the production of normal blood cells. 

Myeloma is diagnosed with protein electrophoresis, peripheral blood smear, bone marrow biopsy, and ex-rays. Myeloma is generally thought to be incurable, but remissions may be induced with certain people and treatments.

Symptoms and signs vary. Diane realized during phone conversations with her Mother that something wasn't right. Joan was confused, unable to balance her checkbook and forgetful. Diane flew to Florida from Colorado to take her reluctant Mother to the physician. After tests, it was clear she had MM. She began radiation and chemotherapy. Over the four plus years that she suffered many of the symptoms Joan described to Diane were exactly the same she had been experiencing with a related blood disease called, Cryoglobulinemia. 

Common problems include weakness, confusion, fatigue, lack of appetite, hypercalcemia, headaches, bowel impacting from pain meds and chemo treatments, extremity swelling, neuropathies, bone pain, non-impact breaks and overall body pain. In the end, Joan didn't want to eat and couldn't remember how to do the simplest of things. Her bones broke easily - ribs from a sneeze and her humerus bones from lifting her arms - her doctor prescribed Hospice to help her finish life more comfortably. Diane sang with her mother, held her hand and prayed her through her final days with great love and compassion.

Multiple Myeloma has been diagnosed in dogs, cats, and horses.

Cryoglobulinemia Vasculitis is a rare blood disease and Multiple Myeloma is a rare blood cancer. Diane has battled Cryo for 23+ 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, muscle and bone 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 a symptom free life. The support of family and friends is monumental with this vicious and painful disease.

Treatments: Diane found the balanced and consistent heat created by Gracie, her service dog; soaking in a warm therapy tub and keeping her legs elevated and saving energy using a wheelchair has helped to reduce potentially life-threatening flare ups.

The SCwSG Cryoglobulinemia Vasculitis Education and Awareness Team 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 the use of service dogs for those suffering from cryoglobulinemia and associated conditions.

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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Rochelle Ray said...

Well Done and beautifully said! My mother also has Multiple Myeloma and has to live with it every day. I see the debilitating pain she suffers and how it has basically robbed me of the mother I once had. I now have Cryoglobulinemia. There is a connection between these diseases!

Unknown said...

Yes!! It's a sad state of affairs and awful to watch our Mom's and loved ones suffer through this. I pray you and I will not follow our Mother's footsteps into this disease... in any case, I do know we will overcome because we are holding hands and crossing this street together!! xo Love & Appreciate you!
xxoo Diane