How to Talk To Your Family and Relatives if hATTR Amyloidosis Runs in Your Genes

1. How To Talk To Your Family and Relatives if hATTR Amyloidosis Runs in Your Genes Whether you have relatives with hATTR amyloidosis, whether you have been diagnosed as the only one in the family, talking to your family is an important first step in raising awareness. Educating your family about hATTR amyloidosis can help you and your family make informed, health-conscious decisions about your future. It's time to start the conversation. hATTR amyloidosis is a serious illness and you may be unsure how to start the conversation with loved ones. Initiating the Conversion ●Learn the facts The more you know about hATTR amyloidosis, the better you will be able to answer your loved one's questions and the better prepared you will be to deal with your illness. Use the information on the official website of AKCEA Therapeutics to familiarize yourself with the various aspects of this disease. ●Explain that hATTR amyloidosis is hereditary If you emphasize that the disease is hereditary, your loved ones will understand why your disease can affect them too. With the help of the family tree tool for hATTR amyloidosis in the family, your family can map the disease concerning all the relatives and see who is at risk of the disease. Please note: a family member can inherit the genetic mutation, but that does not mean that they will necessarily develop hATTR amyloidosis. This fact can be referred to in the conversation about the hereditary aspects of the disease. This can also be a topic that your family members might want to discuss with a doctor.

2. ●Describe how different the symptoms can be This will help your family understand that hATTR amyloidosis can affect several organ systems in the body, including the nervous system, the cardiac system (heart) and the gastrointestinal tract. Additionally, its symptoms can vary widely from patient to patient, even between members of the same family. You might also suggest that while symptoms can vary, some families show a pattern. The age at which symptoms first appear can vary from the mid-20s to mid-60s. These facts may help your elders be open to their own past symptoms. ●Educate about the possibility of a misdiagnosis Explain that hATTR amyloidosis is often misdiagnosed because symptoms are similar to other diseases. Knowing the signs of the disease will help family members identify symptoms faster and contact a health care professional for an accurate diagnosis more quickly. ●Discuss the possibility of a diagnosis Encourage family members to let their health care provider know that hATTR amyloidosis runs in the family. Breaking the news of your illness ●Proceed in a planned way Make a few points on the topics you want to address and what is important to you in the discussions. If it's okay with you, you can also share your personal experience with hATTR amyloidosis. This can contribute to a productive and informed conversation.

3. ●Start with general topics You could easily start the conversation like this: “I want to talk to you about my illness.” You can give the main impetus in the conversation by conveying information that is relevant to the family member you are talking with. You may want to talk about your early symptoms, the doctors you saw, your path to getting your diagnosis (and any misdiagnosis you may have received), and how you are coping with your illness. ●Expect questions It may help if you write down the questions you asked yourself when you were first diagnosed with hATTR amyloidosis. This will help your family members get an idea of any questions they might want to ask their doctors themselves. Everyone may react differently to your story, and it is important to consider all of them. ●Talking to the Children Talking to children about hATTR amyloidosis can be difficult, and you should weigh up whether or when to talk about it. Here are some approaches that can help you while talking to a child: “I have something I want to talk to you about. We have now found out what is wrong with your papa.” “What are you thinking about? It's okay if you're scared or angry. I'm sad and a little scared as well." It is important to speak openly with the children and encourage them to ask questions. Encouraging family members to take action Whether or not your family members have experienced any symptoms of hATTR amyloidosis, it is always a good idea to speak to their health care provider and let them know how this

4. condition runs in the family. The further procedure and the next steps can be discussed together.