Speaking with your healthcare professional about hereditary ATTR (hATTR) amyloidosis
Learning about this condition and your family health history can help you have a conversation with your healthcare professional
The path to diagnosis
Symptoms of hATTR amyloidosis may be similar to those of other conditions.
The more educated you are about the symptoms, the better prepared you can be to speak with your healthcare professional about a possible diagnosis.
It’s important that you discuss all the symptoms you’re experiencing because your healthcare professional may choose to refer you to a specialist who could prescribe further tests to help make a diagnosis.
The more we can educate our doctors, the more they can help these new patients learn about this disease.—Ron Sr.
This list may not be all-inclusive.
|Conditions associated with polyneuropathy|
Chronic inflammatory demyelinating polyneuropathy (CIDP)
Amyotrophic lateral sclerosis (ALS)
Carpal tunnel syndrome
Motor neuron disease
Amyloid light (AL) chain amyloidosis
Amyloid A (AA) amyloidosis
|Conditions associated with cardiomyopathy|
Hypertensive heart disease
Amyloid light (AL) chain amyloidosis
Certain groups of symptoms should cause your healthcare professional to suspect hATTR amyloidosis.
If you experience symptoms and are aware of a family history, speak to your healthcare professional—he or she can conduct an evaluation and determine the right plan of action. Because the condition affects different parts of the body, it may be necessary for your healthcare professional to refer you to a specialist who is familiar with hATTR amyloidosis.
Download the Healthcare Discussion Guide, a resource you can use to help you talk to your doctor about hATTR amyloidosis.
Genetic counseling can help you understand your chances of developing the condition as well as to make you familiar with the testing process and implications of a diagnosis. Genetic counselors can also help you understand the issues related to genetic testing—from personal risk to possible insurance impact, and can help you determine if a genetic test may be right for you.
A genetic test will tell a person if he or she carries a mutation in the TTR gene associated with hATTR amyloidosis. Once a gene mutation is identified, family members of an affected individual can use this information to help determine their own risk.
Alnylam Pharmaceuticals is sponsoring third-party genetic testing and counseling programs for individuals who may carry a gene mutation known to be associated with hereditary ATTR amyloidosis at no charge. The Alnylam Act™ (formerly known as Alnylam Assist™) program was created to potentially enable diagnosis through genetic screening and to provide genetic counseling to help people make more informed decisions about their health. These services are available only in the United States. At no time does Alnylam receive patient identifiable information.
Learn more about Alnylam Act™
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