Cryoglobulinemia Awareness Month/Day - September 23!

  

The rare disease I overcome celebrated it’s 2^nd annual awareness day, Sept. 23! I spent it LIVING with friends and family after passing my hand control driving evaluation/tests. I'm excited to keep moving forward to help more children in need by way of our Foster/Adoption program.

Cryoglobulinemia, a rare disease, is a form of vasculitis, a disease that causes inflammation in the blood vessels.  To be defined as a rare disease, there must be less than 200,000 people known to have been diagnosed.  Due to the fact it is extremely rare, there are no published statistics on the number of people with cryoglobulinemia.

In patients with cryoglobulinemia, when the blood gets below normal body temperature, it precipitates an abnormal protein that causes the blood to become jelly-like.  The thickening of the blood creates damage to the blood vessels and organs throughout the body.  This reaction can lead to complications ranging from skin rashes to organ damage/failure, amputations, strokes and even death. 

It is imperative that the affected person remain warm and avoid stressors that induce a flare up; including, but not limited to, cold temperatures, air conditioning; cold foods or drinks; standing too long; or any emotionally or physically stressful situations. It’s hard to imagine but simple things like grocery shopping, driving and not enough movement cause the blood to pool in extremities and can become deadly activities for a cryoglobulinemic.

Cryoglobulinemia is considered a hidden or an invisible illness.  The person suffering may look fine but actually have significant life-altering fatigue, pain, inflammation, digestion problems, joint aches, concentration issues and more.  The majority of the symptoms are internal; therefore the individual seems “normal” even though he or she has this severe and dangerous disease.  People with cryoglobulinemia tend to suffer in silence. 

Dr. Diane Dike is the founder and director of Second Chance with Saving Grace (SCwSG) 501c(3) nonprofit organization. She started SCwSG in 2007 with a desire to help others and make their dreams come true. She has suffered with cryoglobulinemia for 22+ years. The SCwSG team of volunteers created the worlds first support group for cryo suffers called Cryoglobulinemia Vasculitis Organization (CVO) in 2010. Learn more about this disease or join the support group on Facebook go to: www.facebook.com/groups/318304641519371/

After rescuing Gracie, an injured and homeless Italian Greyhound, Diane trained her to become the world’s first service dog of her type. Gracie helps Diane overcome and more safely live with cryoglobulinemia vasculitis. Amazing!  

Diane shares their incredible story at events, on radio and TV, in magazines, and everywhere possible to raise awareness and help/encourage those who are suffering or caretakers. She was featured on Discovery Health's and Oprah's OWN "Mystery Diagnosis" as "The Woman Whose Legs Turned Black." Her inspirational story continues to reach children, adults and animal lovers of all ages.

To learn more about SCwSG the parent of CVO outreach, to schedule an interview or to become a volunteer, please visit www.DianeDike.org or e-mail Diane at DianeDike@aol.com.

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. 

A few famous people diagnosed with the disease: 

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.

Cryoglobulinemia Vasculitis Organization (CVO Mission)

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.

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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To join the team go to DianeDike.org