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.