Conversations with Lupus | Unscripted 2022|Hetlena Johnson, The Lupus Liar

CWL09_My Lupus and My Hair  

I was asked about whether or not my hair came out while being diagnosed with lupus and how long my hair has been growing while locked. I'll be happy to answer your questions too! Feel free to leave me a voicemail here in Anchor or follow me on Instagram at @TheLupusLiar.


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Get through it. It’s not about getting past it, it’s about getting through it.

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Every now and then you have a moment. Here’s thoughts from a moment of admitting defeat. It happens!

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Want to be contacted? Go to http://bit.ly/palsstudy to complete the interest form! 

The Peer Approaches to Lupus Self-Management (PALS) Study Could Be Right For You!  This is a research study that connects women with lupus with a mentor who also has lupus. Your mentor will encourage you to learn how to manage your lupus better. Are you looking for guidance and support? Be a Mentee! Are you managing your lupus well and want to help other women do the same? Be a Mentor!   This study will investigate whether a peer mentoring program can help improve health-related quality of life, self-management, and disease activity in African American women with lupus. The study is sponsored by the Medical University of South Carolina (MUSC). The investigator in charge of this study is Dr. Edith Williams.  If interested and for more information Please Contact: Dr. Edith Williams at (843) 876-1519. Or via email at wiled@musc.edu.



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Give yourself a ‘Lupus Holiday!’ A short rant on reminding yourself to be present for your health this holiday season. Consider changing your mindset this season to self-care, smart decision making, and careful healthy planning.

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Named one of Fast Company's 2017 Top 10 Most Innovative Companies in Biotech, PatientsLikeMe is on a mission to put patients first! Learn more about PatientsLikeMe from Liz Morgan, Director, Member Experiences. She answers questions on how the company is committed to helping patients live better. Then log onto PatientsLikeMe.com to join a network of over 500,000 people to share experiences, provide support, and track symptoms.Lupus is a life altering and challenging disease to live with. Lupus is a chronic, autoimmune disease that can damage any part of the body to include, but is not limited to skin, joints and/or life organs. According to the Lupus Foundation of America, Inc.* about 1.5 million people, worldwide, have a form of Lupus.-----Host Note: From the heart of experience, I am well aware of the related difficulties that come with living with Lupus. I was diagnosed with Lupus at the age of 16. At this time, Lupus was still a very curious disease. I was told that I would not live more than ten years after being diagnosed. Yet, life trials and errors prove that I am not dead yet! I am currently in the process of writing a memoir about combating Lupus. More research has enabled many Lupus patients to live fulfilling lives. ========================================­===Learning to live successfully with lupus.========================================­===**Click Below to SUBSCRIBE for More Videos:www.youtube.com/user/LupusLiar========================================­===**Click Below to Sign up for the FREE living with lupus tips via email:goo.gl/li06i0**FOLLOW, LIKE, TWEET, SHARE**Twitter: www.Twitter.com/TheLupusLiarFacebook: www.facebook.com/TheLupusLiarInstagram: www.Instagram/thelupusliarPinterest: www.Pinterest.com/thelupusliarWebsite: www.TheLupusLiar.com

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