Living with Primary CD59 deficiency
A rare genetic condition starting in infancy that affects red blood cells, nerves and blood flow to the brain.
Understanding Primary CD59 deficiency
It causes long-lasting breakdown of red blood cells (hemolysis). It also causes early-onset, relapsing nerve inflammation and damage in the arms and legs (polyneuropathy) and one-time or repeated problems with blood flow to the brain (cerebrovascular events). It starts around birth or in infancy.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition. Its description mentions these:
- Long-lasting breakdown of red blood cells (hemolysis)
- Relapsing nerve inflammation and damage in the arms and legs
- Problems with blood flow to the brain (cerebrovascular events)
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 allergy and immune system specialists, blood and bone marrow specialists, brain and nervous system specialists and genetic specialists.
- 3Consider genetic testing
Changes in CD59 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
The Foundation for Peripheral Neuropathy and Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Blood and bone marrow specialists (hematologists); Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Foundation for Peripheral Neuropathy, Immune Deficiency Foundation
- 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 The Foundation for Peripheral Neuropathy 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
Changes in the CD59 gene cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: cd59-mediated hemolytic anemia with or without immune-mediated polyneuropathy; hemolytic anemia, cd59-mediated
Patient organizations
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
- Immune Deficiency FoundationPrimary immunodeficiency · United States
You are more than your diagnosis
Perspectives from people navigating life with Primary CD59 deficiency.
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