Cryoglobulinemia
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Our Medical Outreach: Educating, Encouraging and Increasing Awareness. A safe place for caregivers and people with health challenges of all types, especially cryo, to find help, hope and information.
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September 23 is Cryo Awareness day! Diane and dedicated volunteers developed CVO to bring the cryo community together. CVO's support Facebook group is very active and making connections all over the world.
We all have challenges. It is the way that we choose to perceive and respond to them that makes the difference. 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.
Image courtesy of Kathy Strong
Cryoglobulinemia vasculitis bruise
Cryoglobulinemia on legs
Image courtesy of Kathy Strong
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.
A painful systemic inflammatory blood clotting disease that intensifies when I get cold, stressed, stand or sit with my feet hanging down. Cryo=cold; globu=clot; nemia=blood. The blood turns into a jelly, clogging, 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 is a rare autoimmune disorder (meaning the body attacks itself) that seems to affect twice as many women as men, usually not apparent until middle age. I was one of the youngest known cases. The acute onset started at 23 but with bloody noes and sinus seriour sinus issues at 20 years old, retrospect reveals earlier signs. 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. I find it difficult to participate in normal daily acitivites, concentrate (because of extreme pain), follow directions, and I tire easily. On an average day I experience, some or all the following symptoms:
*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, caused
by 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 periodic
bloody 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)
*Swollen Glands
*Leg/arm heaviness
*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
Connect with our Facebook CVO group for caretakers, medical personal,patients, friends/family and concerned supportors! Watch our Cryo PSA.
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.
* 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.
