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What is My Story Living with Lupus?My Story Living with Lupus is an online community and resource center dedicated to supporting individuals affected by lupus and other chronic illnesses. We provide educational materials, advocacy support, wellness resources, and access to a supportive community to help you navigate the challenges of living with chronic illness.
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Who founded My Story Living with Lupus, and what inspired its creation?My Story Living with Lupus was founded by Susan L. Hendrix, MHA, Ph.D., who lives with lupus and has dedicated her life to supporting underserved communities through the Charlie E. & Minnie P. Hendrix Foundation for Chronic Illness. The platform was created to empower those with lupus and similar conditions by sharing her experiences, knowledge, and resources.
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What types of resources do you offer for people living with lupus?Our resources include educational articles, self-advocacy tools, online courses, and support groups. We cover a variety of topics, including symptom management, healthcare advocacy, mental health, nutrition, and financial assistance options.
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How can I help support My Story Living with Lupus?There are many ways to support us! You can share our resources on social media, volunteer, or donate to help fund the programs we offer for lupus patients. Every effort helps us continue our mission to support the lupus community and underserved individuals.
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Do you have resources for caregivers or family members of those with lupus?Absolutely. We understand the unique challenges faced by caregivers and family members. We provide resources to help them understand lupus, learn effective communication strategies, and develop ways to support their loved ones while also caring for their own well-being.
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What advocacy efforts is My Story Living with Lupus involved in?We actively advocate for health equity, access to quality care for underserved communities, and increased lupus awareness. Additionally, we provide tools to help individuals advocate for themselves within the healthcare system and stay informed about important policies and legislation.
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I have a question thatās not listed here. How can I contact you?Weāre here to help! If you have further questions or need specific information, please reach out to us through our Contact page. Our team will get back to you as soon as possible.
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Do you offer any free courses or resources?Yes! We believe everyone should have access to valuable information about managing their health. Some of our resources, like the "Self-Advocacy in Healthcare: Navigating Chronic Illness" course, are offered free of charge to empower individuals to take control of their healthcare journey. Check our website regularly for new resources and updates!
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How can I join the My Story Living with Lupus community?You can join our community by signing up for our newsletter, following us on social media, and participating in our online courses and discussion forums. We encourage community members to engage with our content, share their stories, and support one another.
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Is there a way to connect with other lupus patients for support?Yes, My Story Living with Lupus provides online support groups and a private forum where community members can connect, share experiences, and provide encouragement to one another. We believe that no one should feel alone on their journey with lupus.
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