Beware of online sickle cell disease ‘advocacy’ that aims to trick you

Can people who don’t have sickle cell disease (SCD) advocate for the community? Absolutely. However, I think there is an important distinction that deserves attention.

Usually, most advocates are patients, caregivers, healthcare professionals, or family members of people living with the disease. However, I’ve recently seen an influx of people joining online support groups and advocacy spaces who have no connection to SCD. While I appreciate this growing interest, some recent trends have left me concerned.

First, let me be clear: I welcome anyone who genuinely wants to improve the lives of people living with SCD. Our community needs more advocates, not fewer. Too many people know little about this condition. Even some healthcare professionals lack adequate knowledge about SCD and its long-term complications. Every sincere voice can help increase awareness, improve understanding, and reduce stigma.

The real issue is not who is advocating; it’s why they are advocating.

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Unfortunately, not everyone enters this space with good intentions. If the motivation comes from compassion, service, education, or a genuine desire to create change, then I think that person has every right to stand with our community. We need allies who will amplify our voices and work alongside us.

But I’ve observed that some people discover that health-related content attracts attention online. Joining disease-specific groups can increase followers, engagement, and sales. So instead of educating people honestly, these folks may fabricate stories, exaggerate experiences, or even pretend to have SCD when they don’t. That type of behavior is deeply troubling to me.

Some join support groups while falsely claiming to live with SCD. Others post fictional stories about painful crises that never happened. A few even use artificial intelligence (AI) to generate emotional images and pair them with fabricated patient experiences. Their goal is simple: attract followers, increase engagement, and ultimately make money. Such actions exploit a community already carrying enormous physical and emotional burdens.

SCD is not a marketing strategy. It is a lifelong medical condition that affects every aspect of a person’s life. Many people spend days or weeks in the hospital because of severe pain crises. Others develop permanent disabilities from complications such as avascular necrosis or stroke. Some lose educational opportunities, careers, relationships, or financial stability. Tragically, many also lose their lives far too early. These experiences are real.

Behind every painful story is a real person who has endured countless hospitalizations, difficult treatments, and unimaginable uncertainty. Every scar, every wheelchair, every blood transfusion, and every painful crisis represents someone’s lived reality. Turning those experiences into fictional content for personal gain is both dishonest and disrespectful.

Not too long ago, I followed a social media page that appeared to promote sickle cell awareness. After watching its content for some time, I realized that it published dramatic “patient stories” almost every day. Most of the images were clearly AI-generated. The stories seemed designed solely to provoke emotional reactions and increase engagement. Rather than educating the public, the page exploited the suffering of people living with SCD. That is not advocacy.

True advocacy requires honesty, empathy, and accountability. It means listening before speaking, and centering the voices of those directly affected. It also requires sharing accurate information, supporting patients and caregivers, and working toward meaningful change rather than chasing likes, followers, or profit.

You do not need to pretend to be a sickle cell warrior to support the community. It can be helpful, though, to ask yourself a few honest questions first: Why are you passionate about sickle cell disease? Are you a healthcare professional determined to improve patient care? Do you have a family member or close friend living with the condition? Have you witnessed its devastating effects and decided to make a difference? Are you committed to improving the quality of life of people affected by sickle cell disease?

I sincerely hope we can continue to welcome more advocates into the sickle cell community. At the same time, I hope people will choose integrity over influence and compassion over clicks. The SCD community deserves allies who educate others with honesty, advocate with purpose, and stand beside us because they genuinely care, not because our pain has become profitable.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.