Being diagnosed with amyloidosis is often a scary, confusing and anxious time.
This is understandable as not many people have heard of amyloidosis before. To help you navigate the early days following a diagnosis of amyloidosis, here is some information to help you make informed decisions about your future.
It is important to learn as much about your disease as possible so you can make informed decisions and communicate effectively with your physicians, caregivers, social workers, etc. The internet has a wealth of information, but make sure what you are reading is up to date; medicine evolves very quickly, so anything published over 2 years ago may no longer be completely accurate.
ARC CEO Isabelle Lousada talks about her experience as a patient. Leading specialist Dr. Comenzo explains the symptoms and causes of the disease.
Seeking a second opinion can be a worthwhile option before beginning your treatment. Another opinion can provide you with a different perspective about your disease and potential treatments to consider, and it is important you feel confident in your decision before beginning treatment. Many insurance companies will cover the cost if a second opinion is requested by either the patient or the doctor. Below are some tips to help you seek a second opinion:
Compile your medical records
It is important that the new doctor have access to all the records and tests performed leading up to and after your diagnosis. This includes blood work, imaging studies, biopsy slides, and any other tests you have completed. These tests will help them make an informed recommendation for your treatment plan.
Check your insurance
See if the doctor that you want to consult with is within your provider network, and if not, ask about the costs. This will be important so you can be prepared and advocate for the best care.
Ask for a referral
It is normal to seek a second opinion when new treatments are being discussed. Ask your physician, or use the My Amyloidosis Pathfinder tool to direct you to an amyloidosis specialty center to make sure you get a suitable and skilled second opinion.
Compare your options
Sometimes the treatment plans from each doctor will be different. Think about which one will be best for you, and discuss the benefits, risks and any concerns you may have about each plan with these doctors.
Health insurance can be challenging to navigate. Information on insurance plans and policy specifics are often confusing and difficult to understand. Here are some pointers for dealing with your insurance company:
If you have health insurance
It is important to work with your insurance company. Review the details of your policy: deductibles, preauthorizations, covered medications, limitations, etc. This is an essential step to do before you call your insurance company to inform them of your diagnosis. If you have specific concerns about your policy, make sure to note them before the call so you can ask your provider up front. After you call your provider it is good practice to note some key points from your discussion for your records (e.g., the date, the representative you spoke with, and what you discussed).
If you don’t have health insurance
If you don’t have insurance, it is important to look at your options as soon as possible. You can begin by contacting a hospital social worker who will be able to outline assistance programs and other ways to help you find alternative forms of health care coverage.
Examples of healthcare assistance programs in the United States include, but are not limited to:
Amyloidosis is a multi-system disease, meaning it affects multiple organs. It is important to be seen at a center that has experience in diagnosing and treating your type of amyloidosis. These centers will have a group of different specialists (i.e., cardiologist, hematologist, neurologist) who will be able to provide a comprehensive evaluation and treatment plan. Learning about clinical trials can be an important part of your care. In a rare disease such as amyloidosis, treatment options are often limited and clinical trials may be the best way for you to access new therapies.
To find an amyloidosis center and what clinical trials you may qualify for, use our My Amyloidosis Pathfinder (MAP) tool.
Finding the right support for you is critical so that you can navigate your amyloidosis care successfully. Connecting with people who will answer your questions and listen to your concerns is a necessary part of your well-being. At ARC, we are dedicated to providing you with the resources you need to assist you through your journey. We can help connect you to medical professionals and centers of excellence so that your questions are answered and that you have access to the quality care you deserve. Asking for help from your friends, family, or from outside resources, is important. Don’t feel like you have to do this alone. There is a variety of support groups all over the world that can connect you with patients that have been through a similar experience, so please contact ARC for further information. Learn more.
Get Information and Support
A specialist on our team can provide treatment information, resources and the support you need to navigate your diagnosis.
Find Clinical Trials and Treatment Centers
My Amyloidosis Pathfinder (MAP) connects amyloidosis patients to appropriate treatment centers and clinical trials specific to the patient’s type and stage of disease.