Alliance For Cryoglobulinemia
You Are RARE But NOT Alone
Welcome, whether you are a patient, caregiver, advocate or professional you are in the right place if you want to learn more about Cryoglobulinemia!
We offer current information about Cryo-Vasculitis, support communities, research opportunities and most importantly we strive to foster global communities for all patients through the “Alliance for Cryoglobulinemia”.
The Alliance For Cryoglobulinemia is an inclusive network of patients, caregivers, family, medical professionals and Cryoglobulinemia Ambassadors dedicated to improving the quality of life for people with cryoglobulinemia. Our goal is to act as an international platform that links all efforts of cryoglobulinemia research, awareness, patient support and education.
The Alliance for Cryoglobulinemia campaigns for research and partners with patient centered research organizations such as The Vasculitis – Patient Powered Research Network and The Vasculitis Clinical Research Consortium. In keeping with our research goal Alliance for Cryoglobulinemia has established a Cryoglobulinemia Research Fund at our partner organization The Vasculitis Foundation.
The Alliance was founded by Marianne Vennitti and Eileen Propp, in 2012.
Join one of our support groups if you would like to meet others who have been diagnosed with Cryoglobulinemia or you know someone who is living with Cryo.
Read and listen to testimonies of others who are
“Living With Cryoglobulinemia”.
Testing For Cryoglobulinemia is not easy!
We are here to help educate you about the testing protocol.
Cryoglobulinemia is a disease defined by the presence of cryoglobulins; which are proteins (also called immunoglobulins or antibodies) that become thick in cold temperatures. This process can restrict blood flow causing damage (vasculitis) to: skin, joints, muscles, nerves and/or organs. Cryoglobulins are antibodies. Cryoglobulinemia, in the vast majority of patients occurs due to Hepatitis C (HCV). Approximately 90 percent of people with cryo have it due to HCV. Cryoglobulinemia is part of a group of diseases called vasculitis — damage and inflammation of the blood vessels throughout the body. Vasculitis is an inflammation of the blood vessels (vascular = blood vessels, itis = inflammation). Vasculitis can occur as a main disease or as a complication of another disease. Vasculitis may happen as the result of an infection, a medicine, or another disease or condition.
Vasculitis can affect any blood vessel: arteries, veins and capillaries. Arteries deliver blood from the heart to organs. Veins return blood back to the heart. Capillaries are tiny blood vessels that connect small arteries and veins. When a blood vessel becomes inflamed the vessel can:
- Narrow, making it more difficult for blood to get through, close off completely so that blood cannot pass through, stretch and weaken the wall of the vessel causing collapse or necrosis.
Symptoms vary widely depending on severity, age of onset, cryoglobulinemia type and associated disease categories. Symptoms can also diminish or become non-existent when appropriate treatment is administered. In general cryoglobulinemia can cause damage to skin, joints, kidneys, muscles, nerves and/or organs. The symptoms one patient experiences with may differ radically from another patient’s symptoms. It is important to recognize that more research is needed to understand the disease and ultimately the symptoms.
Alliance for Cryoglobulinemia offers peer to peer information only. Please, contact your doctor for all medical advice and see our disclaimer.