ATTR amyloidosis can affect your life in many different ways.
Getting treatment from qualified health specialists may help improve your long-term outlook, as well as your quality of life. Connecting with other sources of support may also help you manage the physical, emotional, and social challenges that can go along with this condition.
Read on to learn about some of the resources that are available to you.
ATTR amyloidosis may affect many parts of your body, including your nerves, heart, and other organs. To manage its potential symptoms and complications, it’s important to get comprehensive care.
Depending on your treatment needs, your healthcare team may include:
- a cardiologist, who specializes in heart health
- a hematologist, who specializes in blood problems
- a neurologist, who specializes in nerves
- other specialists
To find specialists in your area, consider asking your primary care doctor for recommendations and referrals. It may also help to:
- Search the Amyloid Foundation’s list of treatment centers.
- Use the Amyloid Research Consortium’s My Amyloidosis Pathfinder.
- Search the American Medical Association’s
- Contact a university or large hospital near you to learn if they have any specialists with expertise and experience treating this disorder.
If you have familial ATTR amyloidosis, your doctor may encourage you to speak with a genetic counselor. They can help you learn more about the condition, including the risk of it being passed from parents to children.
To find a genetic clinic or counselor near you, consider searching the online directories maintained by the National Society of Genetic Counselors or American College of Medical Genetics and Genomics.
Learning more about ATTR amyloidosis may help you gain a better understanding of the disease, as well as your treatment options.
Let your doctor or other healthcare providers know if you have any questions about your condition or treatment plan. They can help you learn more about the condition and support you in making informed choices.
You can also find reliable information online by visiting the Amyloidosis Foundation and Amyloidosis Research Consortium websites.
ATTR amyloidosis may be expensive to manage, especially if you develop serious complications from the disease.
If you have health insurance, contact your insurance provider to learn which healthcare providers, diagnostic tests, and treatments are covered under your plan. In some cases, you may be able to save money by switching to a different insurance provider or plan.
If you’re finding it difficult to manage the costs of healthcare, it may also help to:
- Let your healthcare provider know if you have any questions or concerns about the costs of their recommended treatment plan. They may be able to adjust your treatment plan or refer you to financial support resources.
- Talk to your pharmacist or contact the manufacturers of any medications you’ve been prescribed to learn if you’re eligible for patient discounts, subsidies, or rebate programs.
- Schedule an appointment with a social worker or financial counselor who has experience working with people with chronic health conditions. They may be able to connect you with financial support programs or offer tips to help you manage financial challenges.
If you find yourself feeling sad, angry, or anxious about your diagnosis, you’re not alone. Living with a chronic health condition can be stressful and sometimes isolating.
You may find it helpful to connect with other people who are living with ATTR amyloidosis. For example, consider:
- joining one of the support groups listed on the Amyloidosis Support Groups or Amyloidosis Foundation website
- exploring the online patient forum run by Smart Patients
- connecting with others through social media
If you’re finding it hard to manage the emotional or social effects of this disease, your doctor may also refer you to a mental health specialist. You may benefit from counseling or other treatments.
Seeking support from qualified health professionals, patient organizations, and other resources may help you manage the challenges of living with ATTR amyloidosis.
To find more resources in your community, talk to your doctor or other members of your healthcare team. They may be able to refer you to local support services, as well as online sources of support.