Next Steps After a Diagnosis
Getting a diagnosis of hereditary transthyretin (hATTR) amyloidosis is life-changing.
Living with hATTR amyloidosis can be overwhelming, but there are ways to make living with condition easier.
This impacts your organs and can causesymptomsranging from rashes to gastrointestinal issues to organ failure.
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Most people with hATTR live between three and 15 years from the time they start experiencing symptoms.
Knowing that your life span may be limited can be very distressing.
Its important to realize that people who get treatment for hATTR have longer life expectancies.
New treatments are always being developed, and these treatments could help you live longer and feel better.
Learn life expectancy.
Get a Second Opinion
If youve been diagnosed with hATTR amyloidosis, you likely have the condition.
Most healthcare providers will recommend that all family members get genetic testing.
Its also important to discuss your symptoms and limitations with your family.
Treat Your Symptoms
Keep track of your symptoms.
ARC has a free tool calledMy Amyloidosis Pathfinderthat can help you find clinical trials.
Don’t be afraid to prioritize those, while saying no to others.
See a Cardiologist
Thecardiac symptoms of amyloidosisare the most dangerous, with the potential to be deadly.
Find acardiologistwho is experienced at treating people with amyloidosis, and see them regularly.
Contact Your Insurance Company
Living with a chronic illness means a lot more medical bills.
If you have insurance, drop a line to the company and discuss your new diagnosis and coverage.
Treating amyloidosis can be expensive, so insurance is very important.
Your hospital social worker may be able to help with this process.
Plan for End of Life
Its possible to live for a decade or more with hATTR amyloidosis.
However, many peopleeven those without a life-limiting diseasefeel better knowing that theyve planned for their end-of-life care.
These resources can help you get started.
hATTR Amyloidosis Support Groups
Talking with other people living with hATTR amyloidosis can be very helpful.
Taking the right next step can help you feel more in control of your disease.
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Amyloidosis Research Consortium.Newly diagnosed.
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