Whenever a doctor asks Kelsey Taylor to describe her pain on a scale from 0 to 10, she has to clarify before answering.

“My baseline for pain is a 3, pretty much every moment of every day,” says Kelsey. “So when I tell them I feel at an 8 or 9, it’s actually what a healthy person would probably describe as an 11 or 12.”

Kelsey, a 23-year-old junior at Wheaton College, suffers from sickle cell anemia. But the word “suffer” isn’t enough to describe her relationship with a disease that has not only kept her from leading the life of a typical millennial, but has also robbed her of her once-bright spirit.

An invisible illness 

Sickle cell disease is an inherited blood disorder currently affecting 100,000 Americans, most of whom are minorities. One in every 365 African-American babies is born with the disease, according to the Centers for Disease Control.

“Historically, sickle cell has been a neglected disease,” says Kelly Knee, a scientist in Cambridge studying sickle cell disease for biopharmaceutical leader Pfizer Inc. in its Rare Disease Research Unit. “It’s not as rare as some other diseases, but its treatment hasn’t been given as much attention as more rare diseases.”

Believed to have once been a natural defense against malaria, sickle cell disease causes red blood cells—the body’s primary means of delivering oxygen—to lose oxygen and collapse into crescent, or sickle, shapes. These deformed cells don’t flow correctly through the bloodstream, causing debilitating full-body pain, respiratory distress, strokes, possible organ failure, and an average lifespan of only 40 years.

These are symptoms Kelsey has battled her entire life, and anxieties that loom over her every waking moment. Even as a small child, her disease made her feel different, even contaminated.

“One day when she was little, she asked me, ‘Mommy, why is my blood dirty?’” says Kelsey’s mother, Laura Taylor, director of the Bureau of Housing Management for Massachusetts. “It hurt my heart to know that my child truly believed that about herself.”

A phoenix rising

Kelsey’s disease worsened as she hit puberty. Starting around 13, Kelsey experienced full-body pain crises every month. At 16, she quit playing basketball, spending time with her friends, and going to art class—all things that made her feel normal.

She tried other treatments, including chemotherapy, but nothing made her feel better. Then, after years of hospital stays and procedures, it all became too much, and Kelsey sank into a deep depression. But she didn’t let herself stay down for long.

“On one side, I saw what my life would be if I let this illness get to me,” says Kelsey. “On the other, I saw what I could make it if I just tried as much as I could to be normal.”

This new perspective, reinforced by therapy, inspiring teachers, and more conversations about her life outside of her illness, helped Kelsey get back on track.

“Even though I feel like I never really laughed the same way or lived life with the same gusto, one thing I’ll always be grateful for is how much support I’ve had,” says Kelsey, as she tightens her grip on her mother’s hand.

The power of unconditional love

Through everything, Laura has been by Kelsey’s side as her advocate and support system. In 2014, she also became her stem cell donor when Kelsey was fast-tracked through an experimental clinical trial.

At first, Kelsey’s body accepted the new cells. For a full month, she lived without pain and began thinking that a life free of sickle cell disease was possible. But after that month, her doctor broke the news that her body had rejected her mother’s cells, and the pain soon returned.

Through it all, Kelsey has remained strong. She’s grown into a compassionate, hard-working young woman with big goals for her future. Today, she studies film at Wheaton so she can tell stories about people like herself who live every day with hopes and dreams, despite their diagnoses.

“Kelsey inspires me in so many ways,” says Laura. “Despite everything that she goes through, she truly tries to be a good person, every day. She is genuinely and truly my hero.”

Working to end the pain

Kelsey remains hopeful that more treatments are coming. And there has to be: Since sickle cell disease was first classified in 1911, only a single treatment has been approved, something that Pfizer’s Kelly Knee is determined to try to change. “The burden of pain and fatigue that these patients carry every day is quite high,” she says, “which is something I think about every time I’m in the lab.”

Working at Pfizer, Knee—who has studied hematology extensively since graduate school—leads a team of researchers as they work on developing potential new treatments for sickle cell patients.

“We’re really trying to fill the unmet needs in this community,” says Knee. “We’re studying things that can treat the symptoms of the disease, as well as things that can treat the disease itself. We are invested in helping these patients as much as we can.”

Sharing experiences

In a letter entitled “Dear Scientist”, Kelsey shares her story, and underscores the importance of the work being done to make her life, and thousands of others, better.

On a clear autumn day in Cambridge, after reading this letter, Kelsey and Laura meet with Kelly Knee. The conversation is charged with excitement. After everyone shares their experiences with the disease, from both personal and scientific perspectives, the conversation broadens to include everyone affected by the disease.

Since sickle cell anemia primarily affects minorities and requires extensive pain medication to manage, sickle cell patients constantly combat a stigma, especially because they don’t always appear as sick as they feel.

Both Kelsey and Knee believe this perception will change as more awareness is given to the disease and those who live with it. Which is what makes Kelsey so willing to share her story with the sickle cell community, and everyone else.

“I believe my ability to be articulate, to tell my story, is really important,” says Kelsey. “My voice is what defines me as someone who lives beyond their pain.”

We regret to inform our readers that since the publication of this article, Kelsey has passed away. While Kelsey is no longer with us, the impact she made by raising awareness of sickle cell anemia remains significant. Pfizer and Studio/B offer our condolences to her family, friends, and all those who were touched by her life and work. This update is a tribute to her memory and the legacy she leaves behind.

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