Learn about a rare, inherited condition

Learn about a rare, inherited condition

Hereditary ATTR (hATTR) amyloidosis is a rare, genetic condition that affects an estimated 50,000 people worldwide. It is caused by a gene change, or mutation, that affects the function of a protein called transthyretin (TTR). In hATTR amyloidosis, the TTR gene mutation causes the protein to take on an abnormal shape and misfold, which causes the protein to build up in various parts of the body, including the nerves, heart, and digestive system. This build-up of proteins, also called amyloid deposits, causes the symptoms of hATTR amyloidosis.

Although anyone can be at risk for this disease, it is more common in certain ethnicities, including people of African, Irish, and Portuguese descent. It is estimated that approximately 1 in 25 (4%) African Americans have a certain TTR gene mutation associated with hATTR amyloidosis.

Symptoms of hATTR amyloidosis can be very different from person to person and can affect some parts of the body more than others. Some symptoms a person with hATTR amyloidosis may experience include:

  • Tingling and/or numbness in the hands and feet
  • Carpal tunnel syndrome in both hands
  • Dizziness upon standing
  • Shortness of breath
  • Diarrhea or constipation
  • Unexplained weight loss
  • Nausea and vomiting
  • Sexual dysfunction
  • Kidney dysfunction
  • Weakness
  • Burning pain
  • Loss of sensitivity to temperature

This is not a complete list of symptoms that may be experienced in patients with hATTR amyloidosis. Each patient has a different experience and you may not experience all of these symptoms, or you may not experience them at the same time.

hATTR amyloidosis is passed down through family members. If one parent has hATTR amyloidosis, each child will have a 50% chance of inheriting a mutation that may cause this condition. A family member may inherit the TTR gene mutation, but that does not necessarily mean he or she will develop hATTR amyloidosis.

Educating yourself and your loved ones about the symptoms of this condition can help you identify them if they occur. Symptoms may worsen over time, so it’s important to talk to your doctor to determine the right plan of action. This may include referring you to a doctor with more experience with hATTR amyloidosis or recommending you work with a genetic counselor. A genetic counselor can help you learn more about the genetic testing process and if a genetic test may be right for you.

You and your family can also learn more about hATTR amyloidosis from Alnylam Patient Education Liaisons (PELs), who are professionals with backgrounds in nursing or genetic counseling and who can answer questions and provide helpful resources about this condition.

Visit www.hATTRbridge.com for more information about hATTR amyloidosis and visit www.hATTRPEL.com to connect with a PEL.

This message is sponsored and provided by Alnylam Pharmaceuticals.

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SDFI Announces Distance Learning Classes and Virtual Town Hall

SDFI Announces Distance Learning Classes and Virtual Town Hall

“Diabetes Prevention & You” Town Hall

African Americans represent roughly 13% of the United States population, but account for nearly 85% of the number of persons who have died from COVID-19. This is a startling statistic that indicates the devastating impact of health disparities in chronic health conditions like Type 2 diabetes, disproportionately affecting African Americans and communities of color.

More than 84 million adults in the United States live with prediabetes, and another 30 million already have Type 2 diabetes. African Americans are twice as likely to die from diabetes than whites, only adding to the many burdens Black communities face in America.

Now more than ever, it is crucial that individuals most at risk for Type 2 diabetes find realistic ways to help prevent this manageable condition. The Southeast Diabetes Faith Initiative (SDFI), a program of The Balm In Gilead, is ready to help families and the faith community take a stand and fight back against diabetes by providing faith-based diabetes prevention programs.

To better serve our communities and increase access to this evidence-based lifestyle change program that is a part of the Centers for Disease Control and Prevention’s National Diabetes Prevention Program, SDFI is going virtual!

Beginning this Fall, eligible persons will be able to join one of our distance learning classes. Our experienced lifestyle coaches will be there to guide and support you along this amazing journey to a healthier YOU! Offering culturally tailored, interactive sessions, SDFI does not just provide you with information, but surrounds you with the emotional, spiritual, and mental support you need. Get access to recipes, fitness programs, food journals, and other tools to help you along the way.

Mark your calendar and make plans now to join The Balm In Gilead’s first Southeast Diabetes Faith Initiative “Diabetes Prevention & You” Town Hall on October 8, 2020. During the town hall, we will have an in-depth conversation about Type 2 diabetes, COVID-19, and how we are making SDFI work for our community.

For providers and healthcare professionals, connect with us to explore opportunities to sign up to become a SDFI Healthcare Partner. Our state managers can work with you and your clients to set up informational sessions to raise awareness about the need to increase screening, testing, and referral opportunities for vulnerable populations. Sign up today to receive more information.

Brain Health Center for African Americans’  Partner Spotlight

Brain Health Center for African Americans’ Partner Spotlight

“Laughter is Medicine: HFC Brings the Funny & Education to the Discussions About Alzheimer’s Disease”

The Balm In Gilead’s National Brain Health Center for African Americans partners with a diverse group of organizations, academic centers, and other community-based organizations to support its mission to increase awareness among African American communities about brain health and cognitive issues like dementia and Alzheimer’s disease. It takes a village, and The Balm is proud to highlight HFC’s work (formerly Hilarity for Charity). Founded in 2012 by Seth Rogen and Lauren Miller Rogen (HFC) is a national non-profit organization whose mission is to care for families impacted by Alzheimer’s, inspire the next generation of Alzheimer’s advocates, and be leaders in brain health research and education.

HFC is accelerating progress in Alzheimer’s care, prevention, and support all while bringing some laughs and light to the too-often disheartened Alzheimer’s space. The organization’s blend of comedy, entertainment, and education helps bring much-needed awareness to this disease for which there is currently no cure. In addition to hosting its signature live events and Brain Health Dinners, HFC has raised over 13 million dollars and awarded over 325,000 hours of in-home care relief to Alzheimer’s family caregivers through their Caregiver Respite Grant Program. In addition to providing caregiver respite, HFC organizes online support groups to build caregiver community and connectivity, engages young people across the country to become Alzheimer’s advocates, funds prevention-focused and brain-health research, and teaches people how to care for the health of their brains today, so they can reduce their risk tomorrow.

The Balm commends HFC for their amazing work. We look forward to partnering with them in the future as a part of The NBHCAA’s mission to improve brain health equity and disrupt the impacts of Alzheimer’s and dementia in congregations and communities nationwide. To learn more about HFC, brain health, and how you can get involved, visit them on the web at https://wearehfc.org/brainhealth/