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BEST FAQ
Frequently Asked Questions About Amyloidosis
Find clear, reliable answers to the most common questions about amyloidosis, including symptoms, causes, diagnosis, and treatment, with a focus on African patients and healthcare systems. This section is designed to support patients, families, and healthcare professionals by addressing common concerns and improving understanding of amyloidosis across Africa.
What is amyloidosis?
Amyloidosis is a group of diseases caused by the abnormal buildup of proteins called amyloid in the body. These proteins misfold and accumulate in organs and tissues, interfering with their normal function. Amyloidosis can affect one organ or multiple organs at the same time.
What causes amyloidosis?
Amyloidosis is caused by abnormal proteins that misfold and form amyloid deposits. The underlying cause depends on the type of amyloidosis. Some forms are related to plasma cell disorders, others to genetic mutations, aging, or chronic inflammation.
What is AL amyloidosis?
AL amyloidosis is caused by abnormal immunoglobulin light chains produced by plasma cells in the bone marrow. It can progress rapidly and is considered a medical emergency. AL amyloidosis often affects the heart and kidneys and requires urgent diagnosis and treatment.
What is ATTR amyloidosis?
ATTR amyloidosis is caused by abnormal deposition of transthyretin protein. It most commonly affects the heart and nerves. ATTR amyloidosis includes hereditary and non-hereditary (wild-type) forms.
What is wild-type ATTR amyloidosis?
Wild-type ATTR amyloidosis occurs without a genetic mutation and is associated with aging. It mainly affects older adults and is a common but underrecognized cause of heart failure.
What organs can amyloidosis affect?
Amyloidosis can affect many organs, including:
Heart
Kidneys
Nerves
Liver
Gastrointestinal tract
Skin
Symptoms depend on which organs are involved.
How does amyloidosis affect the heart?
Amyloid deposits stiffen the heart muscle, making it difficult for the heart to fill properly. This leads to heart failure, often with preserved ejection fraction, and can cause arrhythmias and low blood pressure.
How does amyloidosis affect the heart?
Amyloid deposits stiffen the heart muscle, making it difficult for the heart to fill properly. This leads to heart failure, often with preserved ejection fraction, and can cause arrhythmias and low blood pressure.
Why is amyloidosis often misdiagnosed?
Amyloidosis mimics many common diseases and progresses gradually. Limited awareness and lack of access to specialized diagnostic tests, especially in Africa, contribute to frequent misdiagnosis.
Can amyloidosis be treated?
Yes. Treatment depends on the type of amyloidosis. AL amyloidosis is treated by targeting abnormal plasma cells. ATTR amyloidosis can be treated with therapies that stabilize or reduce transthyretin protein. Early diagnosis greatly improves outcomes.
Why does early diagnosis matter?
Early diagnosis allows treatment to begin before irreversible organ damage occurs. Patients diagnosed early have better survival, improved quality of life, and more treatment options.
Why is amyloidosis awareness important in Africa?
Raising awareness helps clinicians consider amyloidosis earlier, reduces misdiagnosis, and improves access to appropriate care. Awareness is the first step toward better outcomes.
Who is Amyloidosis Africa for?
Amyloidosis Africa serves patients, families, healthcare professionals, researchers, policymakers, and partners who are interested in improving amyloidosis care in Africa.
How can healthcare professionals get involved?
Healthcare professionals can join educational programs, research initiatives, quality improvement activities, and pan-African collaborations through Amyloidosis Africa.
How can I support Amyloidosis Africa?
You can support Amyloidosis Africa by becoming a member, participating in initiatives, sharing awareness materials, collaborating on research, or supporting advocacy efforts.
Is amyloidosis a rare disease?
Amyloidosis is often described as rare, but it is increasingly recognized as underdiagnosed rather than truly rare. Many cases are missed because symptoms resemble more common conditions, such as heart failure, kidney disease, or neuropathy, especially in Africa.
What are the main types of amyloidosis?
The most important types include:
AA amyloidosis
Localized amyloidosis
Each type has different causes, treatments, and outcomes.
Why is AL amyloidosis dangerous?
AL amyloidosis can cause rapid organ damage, particularly to the heart. Without early treatment, it can be life-threatening. This is why AL amyloidosis must always be ruled out first when amyloidosis is suspected.
What is hereditary ATTR amyloidosis?
A genetic mutation in the transthyretin gene causes hereditary ATTR amyloidosis. It is inherited in an autosomal dominant pattern and can affect the heart, nerves, or both. Certain mutations are more common in people of African ancestry.
Are there amyloidosis mutations common in Africans?
Yes. One well-known mutation, Val122Ile (also called p.Val142Ile), is more common in people of West African ancestry and is strongly associated with ATTR cardiac amyloidosis. African genetic diversity suggests that additional variants may be underrecognized.
What are common symptoms of amyloidosis?
Common symptoms include:
Shortness of breath
Fatigue
Swelling of legs or abdomen
Numbness or tingling
Dizziness when standing
Unexplained weight loss
Protein in the urine
Symptoms are often non-specific, leading to delayed diagnosis.
How does amyloidosis affect the nerves?
Amyloidosis can damage peripheral and autonomic nerves, leading to numbness, pain, weakness, digestive problems, and dizziness on standing. These symptoms are often mistaken for diabetes or other neurological conditions.
How is amyloidosis diagnosed?
Diagnosis usually involves a combination of:
Clinical evaluation
Blood and urine tests
Imaging studies
Tissue biopsy
Genetic testing (for hereditary ATTR)
Correct typing of amyloid protein is essential.
Is amyloidosis curable?
Amyloidosis is generally not curable, but many forms are treatable and manageable, especially when diagnosed early. Treatment can slow progression, reduce symptoms, and improve quality of life.
Is amyloidosis common in Africa?
Amyloidosis is likely underdiagnosed in Africa due to limited awareness, scarce data, and restricted diagnostic capacity. This does not mean it is rare. It means many cases are missed.
What is Amyloidosis Africa?
Amyloidosis Africa is a pan-African initiative dedicated to improving awareness, diagnosis, research, education, and patient support related to amyloidosis across the continent.
How does Amyloidosis Africa support patients?
Amyloidosis Africa provides reliable information, education, advocacy, and pathways to support patients and families navigating amyloidosis care.
How can researchers collaborate with Amyloidosis Africa?
Researchers can participate in multicenter studies, registries, and collaborative research networks focused on amyloidosis in African populations.
Where can I learn more about amyloidosis?
You can explore our educational pages, research resources, and awareness materials across the Amyloidosis Africa website to learn more.
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