Building your hATTR-PN care team
Fact-checked by Hereditary transthyretin amyloidosis with polyneuropathy (hATTR-PN) is a rare, progressive disorder caused by mutations in the TTR gene.
These mutations can lead to the buildup of abnormal deposits of transthyretin protein, which can cause heart, eye, and digestive problems, as well as pain and mobility issues.
Because hATTR-PN can affect many of the body’s systems, building a care team carefully is critical. A multidisciplinary, collaborative hATTR-PN care team will ensure that you or your loved one receives the care you need and deserve.
Importance of a multidisciplinary care team
Managing hATTR-PN involves bringing together experts who can take care of your condition from different medical perspectives, ensuring no aspect of your care is overlooked.
Your multidisciplinary hATTR-PN care team may include:
- a primary care physician
- a cardiologist
- a neurologist
- physical and occupational therapists
- mental health professionals
- genetic counselors
You may also see additional hATTR-PN specialists if you experience ocular or gastrointestinal symptoms.
Primary care physician
For many people with hATTR-PN, it can take a long time to get a proper diagnosis.
Often, a primary care physician (PCP) is your first point of contact if you think something is wrong. Your PCP can refer you to someone who specializes in the diagnosis and management of amyloidosis.
Beyond that, your PCP can provide basic ongoing check-ups and referrals to hATTR-PN specialists (such as ophthalmologists or gastroenterologists), as needed.
Cardiologist
Living with hATTR-PN means you may be at risk for certain cardiac issues. Because these issues can develop silently, regular monitoring by a cardiologist is essential.
A cardiologist can:
- track heart function and detect early signs of complications
- recommend treatments or lifestyle adjustments to protect heart health
- coordinate with your PCP and other specialists to ensure your care plan considers both nerve and heart health
Having a cardiologist on your hATTR-PN care team helps you proactively manage the cardiac risks of the condition, so you can focus on maintaining your overall health and quality of life.
Genetic counselor
hATTR-PN can be inherited in an autosomal dominant pattern, which means that you need only one copy of the mutated gene to develop it.
If you have hATTR-PN, or suspect it, or if you’re concerned about family members inheriting it, a genetic counselor can help you explore genetic testing and understand the potential implications for you and your family.
Genetic testing can also help detect hATTR-PN early, enabling treatment sooner.
Neurologist
A neurologist is an essential part of your care team, as hATTR-PN can affect the nerves in the hands, feet, and lower legs.
A neurologist can help you with everything from confirming your diagnosis through neurological exams to managing your symptoms. It is, however, important to find a neurologist who specializes in polyneuropathy related to amyloidosis.
Physical therapists and occupational therapists
Physical therapists and occupational therapists play an important role in helping you feel your best. They are the people to call on when you want to reduce pain and improve your strength and mobility.
Occupational therapists can help you:
- succeed in your everyday activities and tasks (like self-care or leisure activities)
- find interventions and adaptations in your environment as needed
- address the physical, cognitive, and emotional factors in hATTR-PN
Physical therapists can:
- help you assess and improve your physical function and mobility
- track and help manage your limitations and improvements over time
- offer therapeutic exercises and activities
Mental health professionals
If you feel like hATTR-PN is affecting your mental health, you’re not alone. From wondering what your future will look like to coordinating care, it’s normal to feel stressed or frustrated.
However, you don’t have to go through these feelings alone. Mental health support through counseling, whether virtual or in-person, can help you navigate these feelings and teach you ways to cope with them in a healthy way.
How family members can support your care team
Living with hATTR-PN means you will likely need to lean on your friends or family members for logistical and emotional support, especially if you find everyday tasks particularly demanding.
Your loved ones can help in many ways, including:
- assisting with personal care and hygiene
- managing household chores and errands
- scheduling and attending medical appointments
- providing companionship and social support
Even small gestures can make a big difference in day-to-day life and help you focus on managing your health. By working alongside your medical team, family members become an essential part of the network that helps you feel supported, safe, and connected.
Amyloidosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
