hATTR Amyloidosis: Symptoms, diagnosis, Treatment, Risk Survey

hATTR amyloidosis – could you be at risk?

ABOUT hATTR AMYLOIDOSIS

PROGRESSIVE

LIFE-THREATENING

RARE

INHERITED

hATTR amyloidosis is a serious but treatable condition. It is a rare disease and very difficult to diagnose. In fact, misdiagnosis is common and it can often take patients several years from symptom onset to get the right diagnosis and start treatment. Determining if you are at risk can help speed up this process.

Take the risk survey today

WHO IS AT RISK?

hATTR amyloidosis is a genetic disease that is passed down through family members.

Individuals of Portuguese descent are at a higher risk of inheriting this rare disease than most other people.

If you have symptoms of hATTR amyloidosis or if it runs in your family, genetic testing is a crucial step in getting correctly diagnosed.

Ask your doctor for more information about genetic testing for hATTR amyloidosis.

SYMPTOMS

Bilateral carpal tunnel syndrome*

Pain and numbness or tingling in the wrists and hands caused by disturbances in nerve function

*Patients often have a prior history of surgery for carpal tunnel syndrome before being diagnosed with hATTR amyloidosis.

Weakness, numbness and pain from nerve damage (peripheral sensory-motor neuropathy)

Nerve damage beginning in the hands and feet that can progress to the central part of the body
Difficulty walking

Symptoms related to the eyes, often causing visual changes

Dark floaters (spots in your vision)
Glaucoma (can lead to vision loss or blindness)
Eyelid swelling and inflammation
Abnormal blood vessels in the eye

Gastrointestinal issues

Nausea and vomiting
The inability to eat a full meal or feeling full after only a small amount of food
Diarrhea
Severe constipation
Alternating episodes of diarrhea/constipation
Unintentional weight loss

Symptoms related to the heart, blood vessels and circulation

Irregular heartbeat
Delay or blockage of the electrical signals in the heart
Cardiomyopathy (disease of the heart muscle)
Thickening of heart muscle

Spinal stenosis

Pain, tingling or numbness of lower extremities caused by nerve compression in the spine due to narrowing of the spinal canal

Damage to the nerves that control internal organs (autonomic neuropathy)

Sexual dysfunction
Sweating abnormalities
Dizziness upon standing after sitting or lying down caused by low blood pressure
Recurrent urinary tract infections (due to urinary retention)

Kidney disease

Kidney failure
Protein in urine (foamy, frothy or bubbly-looking urine)

RISK SURVEY

Take this short survey to find out if you are at risk for hATTR amyloidosis.

1) Select all that apply to you.
I am of Portuguese descentI am of Irish descentI am of Italian descentI am of African-American descentI am of Japanese descentNone of the above apply to meI am of Swedish descent

2) Have you been experiencing symptoms of polyneuropathy within the last 6 months (i.e., weakness, numbness, pain, or nerve damage in the hands and feet), not including symptoms of diabetes (i.e., excessive thirst and excessive urination)?
YesNoI am not sure

3) Select all the symptoms that you have experienced in the past 6 months.
Bilateral carpal tunnel syndrome (numbness/tingling in the wrists and hands)Circulation problems, such as irregular heartbeatGastrointestinal issues, such as nausea and vomitingPeripheral sensory-motor neuropathy (nerve damage in the hands and feet, resulting in burning sensations/pain)Kidney problems, such as protein in urineAutonomic neuropathy (damage to the nerves, resulting in erectile dysfunction and a sudden drop in blood pressure upon standing)Visual changes, such as dark floatersSpinal stenosis resulting in pain, tingling or numbness of lower extremities caused by nerve compression in the spine due to narrowing of the spinal canalI have not experienced any of the above symptoms in the last 6 months

4) Do you have any relatives who have been diagnosed with hATTR amyloidosis?
YesNoI am not sure

5) How many times have you visited a doctor in the last 2 years?
0x2xI can’t remember1xMore than 2x

6) Have you ever been referred to a neurologist before?
YesNoI am not sureI’d prefer not to say