How to be an ally to those of us with sickle cell disease

Sickle cell disease is highly misunderstood, and our patient community is acutely aware of this.

One of the key lessons I’ve learned throughout my journey with this illness is the importance of a strong community. Fighting sickle cell each day and learning to navigate the world as a disabled person are far easier when you have a good support system.

That support system may include allies — those who don’t live with the disease, but still work to support our community, fulfill our needs, and help ensure that we receive fair treatment and equitable opportunities. We should all be allies to marginalized groups in our society. It’s incumbent on every individual to identify our privileges and use them to support people who don’t share the same privileges. It’s the caring and loving thing to do.

For the purposes of this column, I’ll focus solely on how allies can support and amplify the voices of sickle cell patients.

Much of our community’s advocacy and fundraising efforts are led by patients. That can be overwhelming and stressful for us, but also leave us feeling isolated and misunderstood. In addition to managing the disease, we must fight to get the right treatments and battle harmful stigmas.

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Why allyship is important

Allies can help effect positive change by raising awareness, advocating for patient needs, propelling policy changes, fighting against discrimination, and offering emotional support to sickle cell patients.

Sickle cell disease is often underfunded in terms of research, treatment, and support services. Allies can help lobby for more research funding and better healthcare access.

Many people don’t understand sickle cell or its severity, but allies can educate others about the illness and its impact. Sickle cell patients, particularly in the Black community, sometimes face discrimination or are misjudged in healthcare settings. Allies can stand up against injustices in ways the patient cannot, e.g., getting through to people who may automatically dismiss the sickle cell patient because of erroneous preconceived notions.

Allyship can help to lighten the burden unduly placed upon sickle cell patients. For many of us, stress can be a major crisis trigger, so having allies can help us stay healthy and well.

Allyship in practice

In 2018, I was invited to deliver a session at a hematology conference. It required me to travel from London to another part of the U.K., where the medical professionals didn’t have much exposure to sickle cell disease and how to treat it. Unfortunately, before I even made it to the conference, I suffered a sickle cell crisis.

One of the doctors I was scheduled to lead the session with was my first port of call. He came straight to my hotel to be with me, instructed the hotel staff on what to do, and waited with me for an ambulance. He then accompanied me to the hospital and informed the medical staff of my condition and what treatment was required. This doctor contacted my home hospital and got my care plan emailed to the one where I was, and he visited me daily.

I appreciate that he was in a unique position to take several of those actions, but that’s not the moral of the story. What’s important to highlight is that he used his knowledge and position to ensure I received the necessary treatment in a timely manner. He used his influence to raise awareness of my needs, advocated for my rights when I couldn’t, and worked tirelessly to ensure my needs were met.

That is what allyship looks like.

How to become an ally

The first step toward becoming an ally is to educate yourself. Try to learn more about sickle cell disease so you have the knowledge base to challenge assumptions, stand up to discrimination and negative stigmas, and advocate for patient needs. I’d recommend immersing yourself in content from sickle cell patients and connecting with organizations that are focused on supporting our community — and perhaps even volunteering or donating.

Contribute to local and national decision-making in whatever ways you can to ensure policies consider sickle cell patients and don’t leave us at a disadvantage. You can also support organizations working to enact policies that uplift sickle cell disease research and funding.

Lastly, and perhaps most importantly, listen to patient voices and amplify them.

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.