Living with Storage pool disease of platelets
A group of blood conditions in which platelets don't store or release what they need, leading to easy bleeding.
Understanding Storage pool disease of platelets
Granules are tiny storage sacs in platelets that release substances to help stop bleeding. In these conditions, granules are missing, too few, or can't release their contents. The conditions may be genetic or acquired (not genetic).
Signs & symptoms
Symptoms vary from person to person. GARD describes these:
- Frequent nosebleeds
- Heavy or long menstrual periods
- Easy bruising
- Repeated anemia
- Bleeding after surgery or dental work
- Bleeding after childbirth
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 blood and bone marrow specialists and genetic specialists.
- 3Consider genetic testing
Changes in GFI1B are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Blood and bone marrow specialists (hematologists); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 National Bleeding Disorders Foundation
- 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 GFI1B gene can cause it. It can be inherited in an autosomal dominant or recessive pattern, and some cases are acquired rather than genetic.
Also known as: alpha delta granule deficiency; alpha dense granule deficiency; combined alpha-delta platelet storage pool deficiency; delta storage pool disease; dense body defect; dense body deficiency
Patient organizations
- National Bleeding Disorders FoundationStorage pool disease of platelets · United States
You are more than your diagnosis
Perspectives from people navigating life with Storage pool disease of platelets.
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