You Were Never Meant to Carry This Alone

September is Sickle Cell Awareness Month. This is the story we want you to know, and the woman we want you to see.

Part one

What sickle cell actually is

Sickle cell disease starts with one small change: a single letter shift in the genetic code for hemoglobin, the protein that carries oxygen in the blood. That tiny change is enough to warp red blood cells from soft, flexible discs into stiff, crescent-moon shapes. Those sickled cells don't move through the body the way they're supposed to. They get stuck. They block small blood vessels. They starve tissue of oxygen. And they wear out fast, living just 10 to 20 days instead of the normal 120, which is why chronic anemia and exhaustion are part of the daily reality, not the exception.

It's inherited from both parents, and it shows up in different forms, some more severe than others, but the common thread is the same: sudden, severe pain crises; a body working overtime just to keep up; and, over the years, quiet damage to organs, bones, and vision that most people never see.

Sickle cell disease affects around 100,000 Americans. More than 9 in 10 of them are Black.

Part two

Why this disease, and why us

That number isn't random, and it isn't destiny. It's history written into the body. The gene that causes sickle cell also happens to offer some protection against malaria. Generations ago, in parts of the world where malaria was a constant threat, carrying that gene meant a better chance of survival. That protective trait traveled with our ancestors across the Atlantic. What was once a shield became, for those who inherited two copies of the gene, a lifelong disease.

There is nothing broken about that inheritance. It's a story of survival written into the blood, the same resilience that has carried Black women through everything else.

What is broken is how the health system has responded to it.

For decades, sickle cell disease has received a fraction of the research funding given to other genetic diseases that affect largely white patient populations, even though sickle cell affects roughly three times as many Americans. And in the emergency room, where a pain crisis can turn dangerous fast, women with sickle cell disease have reported waiting far longer to be seen and treated than other patients, often labeled "drug-seeking" instead of believed. This is the same pattern so many of us already know in our bones: showing up in pain and having to fight to be taken seriously before anyone will help carry the weight.

That's not a side note to the sickle cell story. That's the story.

Part three

Progress that hasn't reached everyone yet

There is real hope here, and we don't want to skip past it. In 2023, the first gene therapies for sickle cell disease were approved: treatments built on the same CRISPR gene-editing technology you may have heard about, capable of essentially retraining the body to stop making sickled cells. For the small number of patients who have received it, the results have been described as life-changing.

But hope that isn't reachable isn't yet enough.

These treatments cost millions of dollars. They require months of hospital-based treatment at a small number of specialized centers, many of them far from where most patients actually live. And even something more basic, finding a doctor who deeply understands sickle cell disease in adulthood, remains genuinely hard. Pediatric sickle cell care has improved enormously, but when patients age out of it, many find there simply aren't enough adult specialists trained to carry them forward. That gap in care, right when a young woman is stepping into adulthood, is one of the most dangerous points in the entire journey.

So the honest question is the one worth sitting with: what does a scientific breakthrough actually mean for a woman if the cost, the insurance approval, or the nearest treatment center puts it three states away from her?

Part four

Whose voice has to be in the room

Here's what gives us hope: sickle cell warriors and their families have never waited quietly for the system to notice them. Patient advocates have spent decades pushing this disease into public awareness, into research funding, into the very policies that decide who gets access to new treatments. Women who have lived with sickle cell disease their whole lives, who know its pain crises and its quiet victories better than any textbook, are sitting in the rooms where decisions get made, insisting that their lived experience count as expertise.

That's the model. Not care done to a woman, but care built with her: her story informing what gets funded, what gets researched, what gets covered by insurance, and what gets built next.

Part five

Where to find help

If any part of this is your story, yours, your child's, someone you love, here is where to start. These are real organizations doing real work, not us.

National

Sickle Cell Disease Association of America (SCDAA) — the national patient support line: 1-800-421-8453.

Sick Cells — a national advocacy nonprofit centering the voices and lived experience of people with sickle cell disease.

Here in Arizona

Arizona Sickle Cell Association — local support, patient education, and community connection for Arizona families.

Phoenix Children's Sickle Cell Program — comprehensive pediatric sickle cell care in Maricopa County, including support through the transition to adult care.

For adult care, ask your primary care provider for a referral to a hematologist. Coverage and specialist availability vary, so start with your own doctor or insurance provider to find the right fit.

We are not able to vouch for outcomes at any organization or provider listed here. We're pointing you toward people who specialize in this, because you deserve support from those trained to give it.