Community Advocates

In order to stay up to date on latest treatments, drug discovery, clinical studies and how to cope with blood cancer every day, Lupus.net brings you frequent articles, points of view and advice from leading patient advocates and experts.

Current advocates

Charlotte Barnett

Charlotte is 41 years old and is from England. She first started experiencing health problems at the age of 21 when she developed a condition called Pernicious Anemia - a condition where the body cannot absorb vitamin b12. After receiving treatment for this her health returned back to normal and she continued working full time at her job in the travel industry which at the time was her passion. Read more.

Meghan Beaudry

Meghan Beaudry has lived with lupus for over a decade and is still learning about her disease. She began writing as part of her rehabilitation from a severe brain flare in 2014 and simply never stopped. Read more.

Jokiva Bellard

Hello, My name is Jokiva Bellard also known as indianrosee. I was diagnosed with systematic lupus at the age of seventeen and ever since it has been a hard walking journey. I chose to become an advocate after realizing their were people just like me. Read more.

Amber Blackburn

Amber Blackburn is a Registered Nurse turned blogger and patient advocate for those with chronic illnesses. She was forced to leave the workforce after ten years as a nurse; this gave her the patient medical experience and perspective. Being diagnosed and living with a chronic illness has given her the experience of everyday living so she understands both sides of the coin. Read more.

Mary Blackburn

Mary Blackburn is a certified pharmacy technician. She spent the majority of her career working in her community at her local pharmacy. She has two daughters, Caitlyn and Amber. Amber was diagnosed with Lupus eight years ago. Read more.

Eric Chiyembekeza

Eric was 10 years old when his mother was diagnosed with Lupus. During that time, his mother was a single parent to three children—Eric was the oldest. At the time of his mother’s diagnosis, there was a lot of confusion. Read more.

Chandra Jo Crosby

Chandra was diagnosed with Systemic lupus erythematosus on her 8th birthday after months of hospitalization and misdiagnosis. At the time of her diagnosis, her symptoms were so severe she was wheelchair bound and extremely malnourished. Read more.

Negin Dadkhah

Negin Dadkhah is a Lupus warrior living a passionate life despite her stage 4 Systemic Lupus Erythematosus (SLE). She was diagnosed when she was 15 and had just started high school in her hometown of Tehran, Iran. Today, despite keeping flare-ups in check, she lives a normal life as an architect with her husband in Philadelphia. Read more.

Gabrielle Davis

Gabrielle Davis is a former news journalist, turned lupus and patient advocate who uses her experience of living with lupus, chronic illness and an invisible disease to candidly spread awareness, particularly among underserved, minority communities. Read more.

Racquel Dozier

Racquel H. Dozier was diagnosed officially with Systemic Lupus Erythematosus in 2004, but the onset of the disease started in 2002 when she was given a firm diagnosis of Rheumatoid Arthritis. At the prime of her life, Racquel and her family had recently relocated to a new state with a young child, just enjoying life to the fullest. But something just wasn't right. Read more.

Alli Fair

Hi, my name is Alli. I was diagnosed with systemic lupus in December 2020 at the age of 30. Although my diagnosis is recent I have been experiencing symptoms of lupus for over 10 years. Read more.

Marci Kallick

Marci Kallick is a patient advocate who believes we all, as patients, must stand up and protect our health through education. After her own personal experience not getting the answers she was seeking, she turned to resources online such as Health Union and its’ community sites for support. Through community and informational websites, patients are able to take control of their own health journey, lessening the grip illness has on their daily lives. Read more.

Martin Lewis

Martin K. Lewis is an Actor, a Lupus Patient Advocate, and a Patient Advisor, who has been living with Lupus Nephritis for over a decade. After dealing with renal failure at 10 yrs old on Mother’s Day in 2005, Martin and his mother received the official diagnosis and set off on a life-altering journey. Read more.

Maggie LoBue

At the age of 5 I started losing my hair, which was just the beginning. Shortly after my joints began to hurt, aches turned into arthritis. Then swelling causing bell’s palsy, which was pretty traumatic for a teenager. Raynaud’s came around during the cold, then expanded to year-round. Read more.

Farrah McGhee

My name is Farrah; and I have Systemic lupus erythematosus(SLE), also known simply as lupus. Lupus is an autoimmune disease in which the body's immune system mistakenly attacks healthy tissue in many parts of the body. Symptoms vary between people and may be mild to severe. Read more.

Ava Meena

After years of unexplained pain and illness, Ava Meena was diagnosed with systemic lupus in 2017. She is a passionate advocate, blogger, and freelance writer. Her goal is to create relatable and encouraging content for others living with lupus. Read more.

Christopher Reed

J. Christopher Reed is a native of Atlanta, Georgia, and holds a bachelor’s degree with honors from Georgia State University and a law degree from Tulane University. He served as a clerk to the Honorable Brenda Hill Cole, State Court of Fulton County, and Clerk of Court for the Magistrate Court of Rockdale County for a total of ten years. Read more.

Francesca Rudman

Hello, my name is Francesca Rudman and I’m 34 years old and have been a chronic illness warrior for the past 16 years. Immediately following high school in 2004, I became very sick with multiple symptoms that involved multiple body systems. At 19 years old I was diagnosed with Gastroparesis and Idiopathic Edema. Read more.

Marisa Zeppieri

Marisa is an author, journalist, former Mrs. New York, and the founder of LupusChick.com, a NY-based nonprofit and award-winning website for lupus patients. Diagnosed with Systemic Lupus at the age of 23, it was apparent to Marisa and her family she actually had symptoms of the disease since she was a child but unfortunately, was never tested. Read more.

Former Advocates

Sheryl Chan

Sheryl comes from the sunny island of Singapore, and lives with a multitude of chronic illnesses. She first got diagnosed with Antiphospholipid Syndrome - a blood clotting disorder - after experiencing a mild stroke at 14. She developed multiple DVTs and a near deadly clot in the lung at 17, where she fought for her life in the hospital for two months. Read more.

Dion Langley

In 2010 I was diagnosed with Systematic Lupus and for 3 years I struggled with having it and didn’t share it with anyone: I wasn’t mentally prepared to face any of the things that came with having lupus. I didn’t want to be seen as weak or less of a man; because one of the biggest misconceptions about lupus is that it’s a woman’s disease. Read more.

Karah Whatley

My name is Karah Whatley, MSW, and I live in Philadelphia, PA. I have been working in clinical research for the past 10 years and I enjoy it! I love spending time with family and friends, watching crime and drama series, and styling hair. Most of all I love playtime and story time with my son Blake. Read more

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