Founder/President of CVO Dr. Diane Dike has suffered with Cryo since she was 23 (25+ years) and with other overlapping conditions. Personal insight from her life experience.
Cryo is a painful systemic inflammatory blood clotting disorder that intensifies when I get cold, stressed, stand or sit with my feet hanging down. It's like being alergic to living because everything has the potential to cause a flare up.
Cryo=cold; globu=clot; nemia=blood. The blood turns into a jelly like consistency straining the heart and damaging vessels. Proteins deposit in small and medium-sized blood vessels, which can lead to restricted blood flow to joints, muscles, and organs.
It's a rare autoimmune disorder (meaning the body attacks itself). Usually diagnosised later in life or in conjuntion with hepitis, I was one of the youngest known cases and with no hepitis. The acute onset was at the tender age of 23. However, a serious of symtoms started at 20 with bruides, bloody noes, sinus issues and intense aches and pains. It took years to figure out what I had because it is rare and requires a special blood test.
Vasculitis (the hurting disease) refers to inflammation of the blood vessel that includes the veins, arteries and capillaries. I have a high tolerance for pain but this exhaustive list of sensations can get the best of me. On an average day I experience, some or all the following symptom as do many cryo patients.
*Raynauld's-purple/bloody spots (blueness, white blotchy achy hands/feet)
*Swelling of hands, ankles, legs and feet
*Lupus like rash/sores on head/face
*Hives/itching/bleeding when exposed to cold, known as Urticaria
*Petechiae/purpuric skin eruptions-red or purple spots on the body, causedby hemorrhaging (broken capillary blood vessels)
*Weight loss, muscle loss, poor appetite
*Ultra sensitivity to temperature changes
*Joints-swelling in joints, connective tissue/esp. hands, legs, ankles, feet
*Joint aches (arthralgias), polyarticular arthritis*Stomach/intestinal pain, nausea, bloating, irritable bowel with periodicbloody stool, intestinal bleeding-colitis
*Overall flu like weakness, fever, aches, exhaustion
*Blood-low white blood cell count-high red blood count
*High cholesterol (293 Low HDL-High LDL)
*Low blood pressure, high heart rate, cardiac spasms
*Vasculitis (inflamed blood vessels) can cause permanent damage
*Hyperglycemia (low blood sugar)
*Brain-periodic low serotonin with Intense (migraines) headaches, dizziness
*Bloody sinuses/nose/mouth/ulcers, slow healing-allergies, ringing in ears
*Nerves-numbness, tingling, or weakness in the hands, arms, legs and feet*Intense muscle ache, joint, connective tissue, neck, throat pain
*Eyes-floaters (black spots in vision), halo/blurry vision
We all have challenges. These are some of the symptoms that cryo patients has said they deal with.
How 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.
Connect with our Facebook CVO English and Spanish group for caregivers, medical personal, patients, friends/family and concerned supportors!
* Material offered is not to be construed as medical advice. CVO offers free support, educational information, encouragement, personal experiences/stories and ideas on how to overcome the challenges of living with cryoglobulinemia. It is important to realize you are not alone, there is help and support, we care about you and we are better together! Don't give up.
CVO was established to unite patients and the medical community in managing and drawing attention to cryoglobulinemia, a rare blood disease that the founder/director has battled for 25+ years.
CVO's mission is to champion advocacy programs regarding the care, treatment, research, diagnosis and the use of service dogs for those suffering from cryoglobulinemia and associated conditions.
CVO educates patients, healthcare professionals and the public, to bring about greater awareness and to support patients, families, and those who love them.
CVO is the first and oldest organization of its kind in the world earning recognition as a resource for patients, caretakers, medical professionals, and researchers.
CVO’s website offers a wide variety of up-to-date resources, information, videos, links, personal stories, connection to our Facebook CVO support group; information about awareness; highlights on topics of interest and related conditions; and clinical trial information if one should become available.
CVO offers telephone support, the Dr. Diane Dike Radio Show, weekly online gatherings and e-mail correspondence.
Cryoglobulinemia is the presence of abnormal proteins in the blood. These abnormal proteins become thick or gel-like in cold temperatures. Vasculitis causes damage and inflammation of the blood vessels throughout the body.
We are glad you found us. Watch and share "The Woman Whose Legs Turned Black" featured on Oprah's OWN and Disovery Health's Mystery Diagnosis TV Show. It will inspire and bring incredible understanding and awareness.