Familial amyloidosis, Finnish type

What is the long-term outlook for individuals with familial amyloidosis, Finnish type?

Symptoms of this condition usually begin in an individual's 20s or 30s, and they usually emerge in a specific order. Eye-related symptoms typically begin first, followed by nerve and skin manifestations in an individual's 40s. Because of the rarity of the condition, the frequency with which each symptom occurs is not exactly known. The condition is progressive, meaning that symptoms worsen with age. Progression is often slow, but the rate varies among affected individuals.

In the later stages of the condition, individuals may have amyloid deposition in small blood vessels and vital organs, such as the kidney and heart; this can become life threatening. The mortality rate in affected individuals is thought to be slightly higher than in unaffected individuals; however, because the condition is so rare, conclusive studies regarding these statistics have not been performed. The primary causes of death in affected individuals are typically nephrotic syndrome; pneumonia from aspiration due to dysfunction of the bulbar muscles (those of the mouth and throat); or cerebral hemorrhage, likely from cerebral angiopathy (amyloid in the arteries of the brain).

Last updated on 05-01-20

Name: Amyloidosis Foundation 7151 N. Main Street Suite 2
Clarkston, MI, 48346, United States
Toll Free: 877-AMYLOID (1-877-269-5643) Email: info@amyloidosis.org Url: http://www.amyloidosis.org/
Name: Cornea Research Foundation of America 9002 N. Meridian Street, Suite 212
Indianapolis, IN, 46260, United States
Phone: 317-844-5610 Fax : 317-814-2806 Email: http://www.cornea.org/Contact.aspx Url: http://www.cornea.org
Name: Amyloidosis Support Groups Inc. 232 Orchard Drive
Wood Dale, IL, 60191, United States
Phone: 630-350-7539 Toll Free: 866-404-7539 Email: info@amyloidosissupport.org Url: https://www.amyloidosissupport.org/
Name: Amyloidosis Australia, Inc. 131-133 Napier Street St. Arnaud,
Victoria, 3478
Phone: 03 5495 1169 Email: info@amyloidosis.com.au Url: http://www.amyloidosis.com.au/

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The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

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