If you have ATTR-CM, you may benefit from additional support beyond what your doctors provide.Transthyretin cardiac amyloidosis (ATTR-CM) – an incurable condition that involves a buildup of irregular protein clusters in your heart – can truly affect your quality of life. Increasingly arduous symptoms such as shortness of breath, irregular heartbeat, and fatigue may challenge your independence and resiliency.
If you need extra help, several support organizations dedicated to people with ATTR-CM can provide resources and a chance to connect with other people with the condition. You can learn more about treatment options, locations of treatment centers and the most experienced doctors, how to find financial assistance, and tips and tricks to alleviate symptoms, says Paula Schmitt, who is based in Georgia and is the executive director of Amyloidosis Support Groups.
Amyloidosis Support Groups
Amyloidosis Support Groups connect people with ATTR-CM with support systems in their state. The nonprofit’s goal is to educate and empower patients to have a better understanding of their disease,diagnostic testing procedures,treatments,and financial and insurance assistance,Schmitt says.
“Education can help patients feel more informed and confident when communicating with their doctors about their disease and treatments,” she says. “Informed patients are more likely to communicate effectively with their physicians about their questions or concerns and actively participate in their treatment plans.”
The organization provides information on eligibility for free genetic counseling and testing, which can definitely help people with ATTR-CM understand if their condition is genetic, which can guide their doctors toward the most helpful treatment.The group compiles pharmaceutical companies’ assistance programs and connects users to foundations that can help pay out-of-pocket expenses for medications.
Amyloidosis Support Groups meet in-person in more than 30 U.S. cities. The organization has an in-person conference every other year for hundreds of patients and top doctors who specialize in ATTR-CM. It hosts several Zoom webinars each year that you can watch on its YouTube channel.
the organization also has a Facebook group dedicated to ATTR-CM caregivers and their needs.
“Caregivers frequently enough have to take time off from work to get their loved ones back and forth to doctors’ appointments or testing,” Schmitt says. “Adult children may become caregivers to their parents, which can be especially difficult if they also have the disease.”
To stay up-to-date,contact the Amyloidosis Support Groups at https://www.everydayhea
Resources and Support for ATTR-CM Patients and Caregivers
ATTR-CM (transthyretin amyloid cardiomyopathy) is a rare and progressive disease, and navigating a diagnosis can be challenging. Fortunately, several organizations offer support, information, and advocacy opportunities for those living with ATTR-CM, and also their caregivers. Here’s a breakdown of key resources:
Amyloidosis Research Consortium (ARC)
The Amyloidosis Research Consortium is a leading non-profit dedicated to accelerating research and improving the lives of those affected by amyloidosis,including ATTR-CM. ARC provides a complete range of resources, including opportunities to participate in research through surveys, focus groups, and patient panels. This direct patient involvement helps shape research priorities and ensures the patient outlook is included in the growth of new treatments.
Stay informed about the latest developments by subscribing to the ARC newsletter.
Voices for the Heart
Voices for the Heart, an initiative by Pfizer, focuses on raising awareness of ATTR-CM and sharing the experiences of those living with the condition. A key focus of the platform is highlighting the disproportionate impact of ATTR-CM on the Black community, who are more likely to carry the TTR gene mutation associated with the disease. [1]
Voices for the Heart hosts events connecting doctors, community leaders, and patients to facilitate information sharing and address the unique challenges faced by different communities. The website also offers downloadable resources, including information on hereditary ATTR-CM, patient survey data, and personal patient stories.
American Heart Association Support Network
The American Heart Association Support Network provides a community forum for individuals living with various heart conditions, including ATTR-CM. While not specifically focused on ATTR-CM, the network offers valuable emotional support and connection, as many symptoms and challenges overlap with other heart diseases. [2]
Founded in 1924, the American Heart association is the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke. [3] Registration for the support network is free and provides access to a wealth of resources related to heart disease and caregiving. You can register here.
Key Takeaways
Support organizations play a vital role in the ATTR-CM community by:
* Facilitating Access to Information: Helping patients and caregivers understand treatment options and locate experienced physicians.
* Providing Financial Assistance: Connecting individuals with resources to help manage the costs associated with ATTR-CM.
* Fostering Connection: Creating opportunities to connect with others navigating the same challenges.
* Offering Educational Resources: Providing webinars, in-person meetings, and newsletters to stay informed.
* Supporting Advocacy: empowering patients and caregivers to advocate for improved research and care.
Sources:
[1] https://www.voicesfortheheart.com/
[2] https://supportnetwork.heart.org/s/
[3] https://www.heart.org/en/about-us