September 23, Cryo Awareness Day/Month!
September 23, 2010 was the 1st annual Cryo Awareness day! Diane spent it celebrating life with friends and family after passing her hand control driving evaluation/tests. She is excited to keep moving forward with her training so she can stay as independent as possible, continue spokeserson efforts and to help more children in need by way of their foster/adoption program.
Following are some details about Cryo that can be shared with your local paper, on your Facebook page, website and other social pages throughout the year and especially in September and on the 23, our awareness month/day.
Share Everywhere - This website. Each page.
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; drafts; 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.org (SCwSG) a 501c(3) nonprofit organization. She started SCwSG in 2007 with a desire to help hurting people, animals and make volunteers' dreams come true. She has suffered with cryoglobulinemia for 25+ years. The SCwSG team of volunteers created the world's first support group for cryo suffers called Cryoglobulinemia Vasculitis Organization in 2010. They have also created this: the world's first comprehensive CVO website to help patients and those who love them. Learn more by visiting this website often and joining the CVO Facebook support group on Facebook.
After rescuing Gracie, an injured and homeless Italian Greyhound, Diane trained her to become the world's first Italian greyhound service dog of her type. Gracie helps Diane overcome and more safely live with cryoglobulinemia. And she hasn’t been hospitalized since they rescued each other. Diane says, "She’s been the best medicine with no negative side-effects." Amazing!
Diane shares their incredible story at events, on radio and TV, in magazines, social media, websites and everywhere possible to raise awareness and help/encourage those who are suffering. She was featured on Discovery Health's and Oprah's OWN Mystery Diagnosis as "The Woman Whose Legs Turned Black." It continues to air across the world and is available on YouTube. Her inspirational story continues to reach children, adults and animal lovers of all ages.
Please help us to increase awareness through sharing your story, our story, inviting us to speak at an event and by posting this website.
Thank you. Let us know how we can help you!
Diane and your CVO Family
Other Facts About Rare Diseases Rare Disease Day - February 28.
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
One rare disease may affect only a handful of patients in the EU (European Union), and another, touch as many as 245,000.
In the EU, as many as 30 million people alone may be affected by one of the 6000 to 8000 rare diseases existing.
80% of rare diseases have identified genetic origins while others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases affect children.
Characteristics of rare diseases
The 6000 to 8000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease. Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease. The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.
Common problems faced
The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Also the need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients. As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.
How can things change?
Although rare disease patients and their families face many challenges, enormous progress is being made every day. The ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. Important gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones. Both of these advances have led to the development of new diagnostic and therapeutic procedures. However, the road ahead is long, with much progress to be made. More information can be found on Rare Disease Day website
Why we picked a red zebra ribbon for cryo awareness!
Globally, the term "zebra" is a reference to something unusual. Medically it refers to an orphan and/or rare disease or condition.
The core tenet of medical diagnosis is to assume that the simplest explanation is usually the best, i.e., it is generally more productive to look for common rather than exotic causes for disease, hence the phrase -"If you hear hoofbeats, think horses, not zebras."
And that is the inspiration for how the red zebra stripes became the icon ribbon for cryoglobulinemia, a rare blood disorder.
Thank you for caring and sharing! Be sure to include a link to our website any time you share this banner!