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Closing the Loop for Lupus: A Fireside Chat

October 17 @ 12:00 pm - 1:00 pm EDT

Lupus is a chronic autoimmune disease characterized by widespread inflammation that often results in damage to the joints, skin, brain, lungs, kidneys and blood vessels. An estimated 1.5 million Americans have some form of lupus, and 90% are women between the ages of 15 and 44. Lupus is more prevalent among women of color, who also develop symptoms at younger ages and have more severe symptoms and complications from the disease. Systemic lupus erythematosus (SLE) is the most common type of lupus, affecting multiple parts of the body, and cutaneouslupus erythematosus (CLE) primarily affects the skin. Because the symptoms of lupus mimic other diseases, a majority of patients are initially misdiagnosed, and it can take up to 6 years and seeing multiple health care specialists before receiving an accurate diagnosis. Women living with lupus have a greater risk for developing other chronic conditions, such as heart disease and osteoporosis, or lupus nephritis due to kidney inflammation and damage. Although lupus does not affect fertility, pregnant women should be aware of potential complications, such as preeclampsia.

There is no cure for lupus, and the limited treatments available primarily focus on reducing symptom flares, resulting in insufficiently improved health outcomes. There is a pressing need to address gaps in research and clinical education, and to develop policy solutions that will eliminate barriers to access for treatments and quality care for women.

SWHR is hosting a series of webinars to share educational information about the impact of lupus on women’s health. The events discuss how to improve health outcomes through recognizing and addressing symptoms, comorbidities, treatment options, and barriers to accessing quality care, while highlighting the diverse experiences of women living with lupus.

The SWHR Closing the Loop for Lupus series includes:

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Follow the conversation on Twitter at @SWHR and #SWHRtalksLupus.

This event is free and open to the public.

Details

Date:
October 17
Time:
12:00 pm - 1:00 pm EDT
Event Categories:
,
Website:
https://swhr-org.zoom.us/webinar/register/WN_oawtauDpSmGAZdY8Ylf2Fw

Organizer

SWHR

Goals

  • Provide an overview of how lupus affects women’s health
  • Increase visibility of the patient experience, emphasizing ways to empower others and improve quality of care and general wellbeing

Panelists

Ayanna C. Dookie
Stand-Up Comedian, Writer, Host of HydroxychloroQUEENZ, a Podcast on Living with Lupus
Ayanna C. Dookie
Stand-Up Comedian, Writer, Host of HydroxychloroQUEENZ, a Podcast on Living with Lupus

Ayanna Dookie is a New York based stand-up comedian, writer, and co-host of HydroxychloroQUEENZ: a Podcast on Living with Lupus.  Having lived with this “cruel mystery” for almost a decade, she uses her comedy and podcast to raise Lupus awareness while also advocating for her fellow warriors.  Ayanna has performed on Laff Tracks on truTV, Laughs! on Fox, Two Dope Queens on WNYC, NPR’s Snap Judgement, and at the world famous Apollo.  Her writing can be seen on MTV’s Wild n’ Out and BET’s 50 Central.  She also co-produces and performs on Lupus Foundation of America, Northeast Region’s annual “Laugh It Up with Us” Lupus Comedy Show.

Presha Kardile
Lupus Patient and Patient Advocate
Presha Kardile
Lupus Patient and Patient Advocate

Presha Kardile currently works as a HRIS Business Analyst with Emerson Electric Company, based in St. Louis, MO. She serves as part of the organization’s Diverse Abilities Employee Resource Group Global Leadership Team and as a director of the DRMK Memory Foundation, based in Nashik. Presha also serves as a patient advocate. She began writing about her story and journey to a Systemic Lupus Erythematosus diagnosis in October 2021. She has shared her story through several platforms and shed light on topics critical to chronic illness management, such as mental health awareness and improving accessibility in the workplace.

Juana Mata
Lupus Patient, Health Care Advocate, Looms for Lupus
Juana Mata
Lupus Patient, Health Care Advocate, Looms for Lupus

Juana Mata is a Children’s Social Worker for the Department of Children and Family Services. She has been working for DCFS for the past 27 years. Juana works with children and their families to assist, support, and guide them through the process of separation, reunification, maintenance, and or adoption. Juana has been interviewed by Telemundo on her Lupus journey, shared her story with the California Chronic Care Coalition, My Patient Rights. She is the National Ambassador for the NIH All Of us Research Program as well as a Virtual Advisor Team member for both the All of us Research Program and the Scripps Research Digital Trials Center. She has been featured as a Lupus Hero by Lupus LA, written blogs for Lupus Research Alliance and was part of the Advocacy\Lobbying efforts in Washington DC on March 2018 through 2022. Also in March of 2018, Juana was honored as the 48th Assembly District Woman of the Year by Assemblywoman Blanca E. Rubio in the annual event at the Capitol. Juana was the 2019 Lupus Patient Advisor for Patients Like Me, the world’s largest personalized patient platform. In 2018 and 2019 Juana was a consumer advocate for the scientific peer review of Department of Defense. Congressionally Directed Medical Research Programs’ Lupus Research Program. Juana also advocates for Fibromyalgia and Mental Health, she attended the first Fibromyalgia DC advocacy day in 2019. Juana is one of the co-founders of Looms for Lupus is a nonprofit organization that provides support for Lupus survivors, their families and caregivers. She dedicated to raising awareness, self-advocacy and advocating for lupus, fibromyalgia and mental health. Juana advocates with local, state and national government officials. Juana lives in La Puente, CA with her husband and Son. She has two sons and two grandchildren.

 

Sponsor

SWHR’s Lupus Program is supported by educational sponsorships from by Aurinia Pharmaceuticals and Eli Lilly & Company. SWHR maintains editorial control and independence over educational content.