Living with Cryoglobulinemic vasculitis
A condition in which abnormal proteins thicken in the cold and block blood vessels, causing skin, joint, nerve, and organ problems.
Understanding Cryoglobulinemic vasculitis
At temperatures below normal body temperature, cryoglobulins become solid or gel-like. Many people with them have no symptoms. When symptoms occur, they may include purplish skin (purpura), weakness, joint pain, liver disease, and kidney problems. It is typically linked with chronic hepatitis C virus (HCV) infection. Diagnosis is based on an exam and finding cryoglobulins in the blood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Purplish skin spots (purpura)
- Joint pain and arthritis
- Weakness and muscle aches
- Liver and kidney problems
- Nerve damage with numbness or weakness
- Fever
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, brain and nervous system specialists, kidney specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Global Autoimmune Institute, Vasculitis Foundation and The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Kidney specialists (nephrologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Global Autoimmune Institute, Vasculitis Foundation, The Foundation for Peripheral Neuropathy
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Global Autoimmune Institute and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the underlying cause is unknown. It is typically linked with chronic hepatitis C infection.
Also known as: essential cryoglobulinemia; essential mixed cryoglobulinemia; mc; meltzer syndrome; mixed cryoglobulinemia; primary cryoglobulinemia
Patient organizations
- Global Autoimmune InstituteCryoglobulinemic vasculitis · United States
- Vasculitis FoundationCryoglobulinemic vasculitis · United States
- The Lauren Currie Twilight FoundationCryoglobulinemic vasculitis · National Kidney Foundation
- Renal Support NetworkKidney diseases · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Cryoglobulinemic vasculitis.
Explore research for Cryoglobulinemic vasculitis
Explore actively recruiting Cryoglobulinemic vasculitis studies with HealthSpark.
Find actively recruiting studies for Cryoglobulinemic vasculitis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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