Living with Finnish type amyloidosis
An inherited condition (lattice corneal dystrophy type II) with protein deposits that affect the eyes, nerves and skin, worsening with age.
Understanding Finnish type amyloidosis
The deposits affect the eyes, nerves, and skin and worsen with age. The earliest sign, usually in a person's twenties, is clouding of the cornea (the clear front of the eye) with a lattice pattern, which can affect vision. Painful corneal erosions can also occur. Nerve problems typically begin in the forties and can affect the face and speech.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Clouding of the cornea and vision loss
- Dry eyes, dry mouth and dry skin
- Facial palsy (weak facial muscles)
- Drooping upper eyelids
- Nerve damage in the hands and feet
- Hearing loss
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, eye disease specialists and genetic specialists.
- 3Consider genetic testing
Changes in GSN 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
Amyloidosis Support Groups Inc., Amyloidosis 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); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Amyloidosis Support Groups Inc., Amyloidosis 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 Amyloidosis Support Groups Inc. 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 GSN gene cause it. It is autosomal dominant, which means one changed copy of the gene is enough.
Also known as: agel amyloidosis; amyloid cranial neuropathy with lattice corneal dystrophy; amyloidosis 5; amyloidosis due to mutant gelsolin; amyloidosis v; amyloidosis, familial, finnish type
Patient organizations
- Amyloidosis Support Groups Inc.Finnish type amyloidosis · United States
- Amyloidosis FoundationFinnish type amyloidosis · 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 Finnish type amyloidosis.
Explore research for Finnish type amyloidosis
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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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