Learning that amyloidosis may run in your family can bring up many emotions at once. You may feel worried about your children, unsure what to tell siblings, or relieved to finally have an answer.

For many families, these conversations start after testing for hereditary transthyretin amyloidosis (hATTR). Genetic testing can confirm whether a TTR gene variant is present. Notably, wild-type ATTR amyloidosis is not inherited the same way hereditary disease is.

In conversations on MyAmyloidosisTeam — like this one about experiences with genetic testing — members of MyAmyloidosisTeam have shared how these conversations unfolded in their own families. Their experiences show that there is no single right way to talk about hereditary amyloidosis. Still, several lessons came up again and again.

🗳️ Have you had genetic testing for hereditary amyloidosis?

Yes, and a hereditary gene variant was found.

Yes, but no hereditary gene variant was found.

Yes, and I’m waiting for or unsure about my results.

No, I haven’t had genetic testing.

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1. Make Sure You Understand What Was Tested — and What the Result Means

Before talking with family, it can help to make sure you understand exactly what testing was done and what the results mean. Genetic testing may help distinguish hereditary ATTR from wild-type ATTR, which can shape what comes next for a family.

One member explained the basic question this way: “It depends what type of amyloidosis she has. There is one that is hereditary. If she has the hereditary type, you can be tested to see if you have it.”

“Genetic testing also helped to diagnose my mom and my daughter. Now other family members can also get tested …”

— A MyAmyloidosisTeam member

But some members said the testing process itself was confusing. One member shared, “There was never any ‘counseling’; it was another diagnostic tool. Perhaps I missed something.”

Another member discovered that a test they thought had been done apparently had not been completed because of an insurance issue: “I was told by the hematologist I did not have the hereditary type, but a few months later, received a letter stating that the hereditary test was not approved by my insurance. So, apparently it was never done.”

Before sharing information with relatives, consider confirming whether the genetic test was completed, what the result means, and whether relatives should speak with a genetic counselor or another specialist. You can also request a written copy of the result so you have something accurate to refer to.

2. Be Ready for One Result To Affect the Whole Family

A positive hereditary result can change the conversation from “What is happening to me?” to “What could this mean for all of us?” In hATTR amyloidosis, first-degree relatives may have a 50 percent chance of inheriting the gene variant, which is one reason family conversations can feel so weighty.

Several members said their own testing led children or other relatives to consider testing. One member described how testing connected several relatives: “Genetic testing also helped to diagnose my mom and my daughter. Now other family members can also get tested …”

Another member shared that their daughters were tested after the hereditary result came back positive: “I did have genetic testing prior to treatment. My daughters did as well, as I tested positive for the hereditary gene. My treatment was based on further testing.”

“There was never any ‘counseling’; it was another diagnostic tool. Perhaps I missed something.”

— A MyAmyloidosisTeam member

This can be a lot to carry. You do not have to explain everything in one conversation. Some people may need time to process the news, ask questions, or decide whether they want more information.

3. Expect Strong Emotions, Especially When Children Are Involved

For many members, the hardest part was not fear about their own health. It was fear about what the result might mean for their children.

That worry can begin even before test results arrive. Some people may feel guilt, even though no one chooses which genes they inherit or pass on.

“I have four adult children, and all four got tested genetically, and all came back negative for this disease!”

— A MyAmyloidosisTeam member

One member awaiting results described the fear clearly: “I just had a swab test done and am awaiting results. My biggest prayer is that my son is not positive. That is my nightmare way beyond the fear of this disease.”

These conversations may bring relief, sadness, anxiety, or all three. It may help to name those feelings directly and let relatives know you are sharing the news because you care about them.

4. Share Negative Results, Too

A negative hereditary result means the genetic test did not find a disease-causing gene variant associated with hereditary amyloidosis. Getting a negative result can also be important family news.

Some members said it brought relief because relatives no longer had the same concern about inheriting the condition.

“I was told it was often passed down from mothers to daughters. I remember my mom having symptoms I have, and her doctors did not detect this disease!”

— A MyAmyloidosisTeam member

One member described how the family reacted after repeated tests found no hereditary variant: “Three different genetic tests found no variants, so now assumed wild type. … Family relieved of genetic fears.”

Another member described the relief that came when their adult children tested negative: “I have four adult children, and all four got tested genetically, and all came back negative for this disease!”

Even with a negative result, it’s still worth confirming what the test does and does not show. A healthcare provider can explain whether any follow-up is needed and whether other relatives need to take action.