Why You Need To Know Your Family’s Health History

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WHAT IS GRANDPARENTS DAY?

Grandparents Day is celebrated each September. Celebrations come in many forms, including gift-giving, sending cards and letters, making phone calls and participating in activities with grandchildren.

  • It is also a time that families gather together and reminisce about the good old days by flipping through old photo albums, sharing grandma’s recipes and family traditions.
  • For so many, grandparents are people to love and look up to, who have passed so much wisdom down through the generations and taught so much. Essentially, they are the cornerstone of the family.
  • This Grandparents Day, I’m encouraging everyone to learn more from their grandparents about their family’s health history and conditions they may be at risk for.

WHY IS IT IMPORTANT FOR FAMILIES TO TALK ABOUT THEIR HEALTH HISTORY?

Having conversations about family health history is important because it can help people know their risk for certain conditions and diseases, so that they can potentially recognize and address the symptoms and underlying condition sooner.

  • Some inherited conditions that are passed down through generations can be undetectable for some time, then progress quickly.
  • Also, some rare, inherited diseases occur at a higher frequency in African-Americans than in other populations, including sickle-cell anemia, lupus, and hereditary ATTR (hATTR) amyloidosis.
  • Knowing your family health history can help you understand your potential risk for developing an inherited condition and help you make more informed decisions about your health.

WHAT SHOULD YOU DO IF YOU FIND OUT AN INHERITED DISEASE RUNS IN YOUR FAMILY?

 It’s important to keep calm and educate yourself as much as you can about the condition. Your doctor or a support group can help provide information and resources, which may include speaking to people like me.

  • In my role as a Patient Education Liaison for Alnylam, I help to educate individuals and their families about hATTR amyloidosis.
  • Other tools, like genetic testing and counseling, can provide information on your risk for genetic diseases.
    • Alnylam sponsors no-charge, third-party genetic testing and counseling for individuals who may carry a gene mutation known to be associated with hereditary ATTR amyloidosis through the ALNYLAM ACT® This program is available in the U.S. and Canada.

CONVERSATIONS ABOUT FAMILY HISTORY AND POTENTIALLY SERIOUS DISEASES COULD BE DIFFICULT TO START. DO YOU HAVE ANY TIPS OR RECOMMENDATIONS FOR STARTING THOSE DISCUSSIONS, KNOWING HOW IMPORTANT THEY ARE?

One of the first things I always ask patients about is their family history.

  • These can be hard conversations to start, but knowledge about a condition can be incredibly powerful. It is helpful to keep that mindset and remember that teaching your family members about your family’s health history can put future generations in the best possible position to get the help they need, if and when they need it.
  • If you’re trying to have a conversation about a disease or condition your family is facing, combining it with an activity like cooking, spending time outside, or crafting keepsakes can help to ease into the conversation and create positive family dynamics.
  • Also, being patient with someone is one of the simplest ways to show compassion and allow others to open up about how they’re feeling.

 HOW CAN GRANDPARENTS PRIORITIZE THEIR OWN HEALTH?

Grandparents give so much to their families. I always try to remind the grandparents I speak with how important it is to prioritize themselves as well.

  • Luckily, spending time with family – especially grandchildren – can have a positive impact on health.
    • In a recent AARP survey, 51% of grandparents said their relationship with their grandchildren has helped to alleviate their health conditions.
    • In honor of Grandparents Day, Black Health Matters and Alnylam partnered together to suggest some great and creative ways families can spend time together on blackhealthmatters.com.
  • I encourage grandparents out there to ensure they’re maintaining a healthy diet and sleep schedule, getting exercise, and speaking with their physician about any symptom they might be experiencing that seems out of the ordinary – however minor it may seem.

 WHERE CAN LISTENERS GO FOR MORE INFORMATION?

For more information and resources related to Grandparents Day, visit grandparents.blackhealthmatters.com and for more information about hATTR amyloidosis and options for genetic testing, visit Alnylam’s hATTRBRIDGE.com website.

 WHAT IF YOU’RE ADOPTED AND DON’T KNOW YOUR FAMILY HISTORY?

If someone is adopted and doesn’t know their family history, I encourage people to pay attention to any signs or symptoms, share with their family and speak to their healthcare provider (HCP) to determine next steps. Your HCP may decide to do more tests to determine if you have hATTR amyloidosis. As part of their work-up, your HCP may decide to order a genetic test. Alnylam sponsors no-charge third-party genetic testing and counseling for individuals who may carry a gene mutation known to be associated with hATTR amyloidosis. This program, called Alnylam Act, is available for patients age 18 or older with a suspected diagnosis or a confirmed family history of hATTR amyloidosis. You can find out more at www.alnylamact.com.

MY FATHER PASSED ALMOST 2 YRS AGO FROM AMYLOIDOSIS. CAN YOU PROVIDE THE INFO AGAIN OF WHERE YOU WORK AND GENETIC TESTING. LASTLY, WHEN SOMEONE IS TESTED IS THAT REPORTED TO THE INSURANCE COMPANY. I AM WORRIED ABOUT BEING LABELED WITH A PREEXISTING CONDITION.

Thanks for your question. I am a Patient Education Liaison at Alnylam Pharmaceuticals. There are different forms of amyloidosis. I’m an expert in hereditary (ATTR) amyloidosis which is a genetic condition that can be passed down through families.  If one parent has hATTR amyloidosis, a child will have a 50 percent chance of inheriting a genetic mutation that may cause this condition.  For more information regarding this condition and genetic testing and counseling, please visit www.hattrbridge.com.  We encourage you to speak with your healthcare provider or a genetic counselor about the benefits, risks, limitations, and potential implications of testing for hATTR amyloidosis.

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