Hereditary Amyloidosis (hATTR)
Awareness and Early Detection
GAME PLAN
Amyloidosis Awareness Game Plan: Develop strategic alliance with coalitions working together on a common goal to bring awareness to health issues such as this genetic disease that affects 1 out of 25 African Americans called HaTTR Amyloidosis. They are the most and underserved patients in healthcare. We can change that with awareness!!! By working together with community leaders and organizations, we aim to create a network of informed advocates who can help spread awareness about the v122i variant, encourage early detection, and ultimately save lives.
Early and accurate diagnosis, along with an individualized treatment plan, are key to achieving positive outcomes for patients and families, with an extended support community of healthcare providers and peers.
CATHCHING AMYLOIDOSIS EARLY IS CRUCIAL FOR MANY REASONS:
Better Treatment Options:
Early detection provides more treatment options, which can help manage the disease more effectively and slow its progression.
Improved Prognosis:
Early intervention can significantly improve the overall prognosis and quality of life for patients, reducing the risk of severe complications.
Organ Preservation:
Amyloidosis can cause serious damage to organs like the heart, kidneys, and liver. Early diagnosis helps prevent irreversible organ damage and preserves organ function.
Symptom Management:
Early detection allows for timely symptom management, helping patients maintain a better quality of life.
Family Awareness:
For hereditary forms of amyloidosis, early diagnosis can prompt family members to get tested and take preventive measures.
Lower Healthcare Costs:
Early treatment can reduce the need for more intensive and expensive interventions later on, lowering overall healthcare costs.
Overall, early detection of amyloidosis leads to better health outcomes, more effective management, and a higher quality of life for patients.
Amyloidosis Health Awareness Initiative: Variant v122i Pilot Campaign
Our Initiative provides opportunities for Awareness for Communities, Community Groups and Centers, Social and Civic Clubs, Senior Centers, Retirement Communities, Churches, etc.:
Educational Awareness Presentation: We are available for FREE educational workshops and seminars tailored to the needs of national diverse community groups, seniors, employers, NFL Alumni, College Alumni, etc. providing crucial information about Amyloidosis v122i variant, its symptoms, and the importance of early diagnosis, empowering them with knowledge and resources to seek timely medical advice.
Resource Materials: We supply brochures, flyers, and other educational materials to disseminate within community centers, ensuring that accurate and comprehensive information is accessible to all. My Amyloidosis Pathfinder tool which people register online (free) and then they can look online regarding clinical trials, genetic testing and centers geographically throughout US and Canada.
http://www.myamyloidosispathfinder.org/
Guest Speakers: Our program consists of leading doctors and researchers specializing in amyloidosis and the v122i variant to provide your community group with comprehensive insights into the disease during these presentations. They will discuss its nature, symptoms, the specific risks associated with the v122i variant, and the profound impact on the African American Community. We have patient advocates and care givers who have confronted the challenges of living with amyloidosis and the v122i variant will share their personal experiences. This firsthand perspective vividly illustrates the difficulties in obtaining a timely diagnosis, underscoring the urgency for increased awareness.
Collaborative Projects: We collaborate with social, civic clubs and any groups that want an informative presentation on health initiatives and awareness campaigns, helping to spread the word about amyloidosis throughout the community.
Do you have any or all of these symptoms?
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Fatigue
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Tendon Rupture
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Stomach Issues
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Shoulder, Hip, Knee Pain
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Swelling in Lower Legs
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Shortness of Breath
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Irregular Heartbeat
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Carpal Tunnel Syndrome
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Pain in Lower Back
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Tingling or Pain in Toes/Feet
(The chart below describes symptoms using more ‘medical’ terms for the symptoms described above)
By working together with community leaders, healthcare, employers and organizations, we aim to create a network of informed advocates who can help spread awareness about the Amyloidosis v122i variant, encourage early detection, and ultimately save lives. Your involvement and support are crucial in making this initiative a success.
