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sickle cell disease

She went through a lot as a kid, but now she's finally coming out strong.

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Taylor Delk just started college in Atlanta, and she can't wait to get into dating for the first time.

However, she has one major concern: when and how should she tell the boys she likes that she has a serious disease?

All photos via Taylor Delk.

Taylor has sickle cell disease — a genetic disorder that affects the health of red blood cells and can cause extreme pain, tissue damage, impaired fertility, strokes, and even early death. She has type SS, which occurs when you inherit copies of the hemoglobin S gene from both parents. It's the most common form of the disease and also the hardest on the body. It means she can experience the worst symptoms like regular fatigue, joint pain, anemia and infections at a higher rate.

But perhaps the hardest aspect of her disease is that you can't tell she has it just by looking at her.

"It’s always hard to open up to people [about the disease] at first," Taylor says. "Sometimes I would feel embarrassed, because it’s not normal, really."

While she's always had sickle cell disease, that doesn't make talking about it any easier.

As a young kid, she got very sick all the time, which often required regular trips to the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta. A couple of times she even had acute chest syndrome, which is a severe side effect of sickle cell disease that causes intense chest pain and can be life-threatening.

Needless to say, she missed a lot of school.

She was usually open with her close friends about her condition, but other kids at school would occasionally question her about her illness because they couldn't see any evidence of it.

Taylor (second from the left) with her fellow varsity cheerleaders.

"I remember when I was younger, my peers would be like, 'Well you don’t look sick,'" Taylor recalls.

She'd find herself having to say things like, "I’m not sick right now, but, you know, I am. My body is not the same as yours."

For example, she can experience pain spikes that start at a 4 on the pain scale and suddenly jump to a 9, but they don't always show on her face.

The disease ramped up during her adolescence, likely because her body was growing and changing rapidly. However, once she reached her senior year, her symptoms began to mellow out. But that doesn't mean she can't still have a pain crisis anytime anywhere.

She's learned to cope with the effects because of her amazing support system, starring her mom.

Taylor at prom.

"My mom never leaves the hospital," Taylor says. "She never leaves me by myself." Her extended family also checks in with her on the regular and even stays to help out for days at a time during Taylor's more severe episodes.

Her mom also constantly encourages her to talk candidly about her disease, which should help her as she makes her way through college.

"My mom made me tell people," Taylor recalls. "I think she wanted me to be comfortable with myself."

The encouragement seems to have helped. Taylor now finds it much easier to be open about it, even with people she doesn't know as well. She realizes people need to know in case she finds herself in a crisis without her family nearby.

They also need to know so that future generations of people with sickle cell disease don't feel like they have to hide it.

Even though her symptoms have settled, Taylor's still talking about sickle cell disease, not just for herself, but for everyone.

Taylor at the airport with her friend Alexis.

Especially her little sister, who also has sickle cell disease.

Taylor's sister Trinity is 11 years old and has the same type of sickle cell disease Taylor has, but so far, her case seems to be less severe. However, that hasn't stopped Taylor from being a good big sister — aka pestering Trinity to take care of herself.

She constantly tells Trinity to drink water and gives her tips for coping with pain crises, like take a walk, use heat pads, listen to music, and talk to someone to distract yourself.

And most importantly, she encourages Trinity to be open about her disease so she grows up without any shame.

Now that Taylor's on the precipice of a new adventure, she plans to live life to the fullest, sickle cell disease be damned.

Taylor at high school graduation.

Yes, that means making new friends and meeting boys, but it also means starting out on a path towards an exciting career. She's taking pre-law classes and plans to become a lawyer, which is not a stress-free field. And even though stress has been known to exacerbate symptoms, Taylor's not shying away from her dream.

She's also trying not to shy away from talking about her disease with new people. She knows the more who understand it, the less alone people who have it will feel. Caregivers at the Aflac Cancer and Blood Disorders Center know that too, which is why they offer counseling and support groups for children living with sickle cell disease as well as their parents.

And who knows, that candidness could lead to an amazing new relationship.

To learn more about sickle cell disease or the Aflac Cancer and Blood Disorders Center, visit choa.org/fightsicklecell.

Family

This high school senior is looking ahead, and her sickle cell disease won't hold her back.

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At first blush, LaTia Bell is just like any other high school senior.

She likes school, especially science, and keeps her grades up with college applications just around the corner. She just started playing tennis, and in her free time, she likes to read books and learn about sharks — her favorite animal. Like most other students in the U.S., the pressure is on to keep up, stand out, and excel as competition to gain college admission continues to grow more fierce.

What you can't see is that LaTia, despite all of her work ethic and enthusiasm, is chronically fatigued all the time.

When it's cold — and even sometimes when it's not — her entire body is wracked with pain. She misses weeks of school at a time in the hospital. Even though she strives to be like any other girl, LaTia's sickle cell disease prevents that from being possible.

All photos courtesy of LaTia Bell, used with permission.

Sickle cell disease is a blood disorder that can, to put it bluntly, make life hellish.

“It seems I always get sick around the most important dates,” LaTia says, talking about her sickle cell disease like it’s a mischievous imp rather than a painful and difficult disease. “Usually when I’m sick, I miss at least three days of school. So it is really hard.”

Sickle cell disease is a genetic disorder that prevents a person’s red blood cells from becoming flexible, round, and healthy. Instead, they become rigid and crescent-shaped, unable to carry the amount of oxygen the body needs and dying off much faster than healthy blood cells do.

The result is that chronic fatigue LaTia is constantly faced with, along with other symptoms like intense, frequent pain resulting from a lack of oxygen being delivered to key body parts, causing muscles to seize up. People young and old living with sickle cell disease are also susceptible to strokes and infections and have to take medications that can take even more of a toll on the body.

The symptoms of sickle cell disease make even mundane tasks feel like impossible feats. Last year, LaTia missed weeks of school and more than a few tennis competitions because of her sickle cell crises.

But as a patient at the Aflac Center and Blood Disorders Center of Children’s Healthcare of Atlanta, where many young people are taught to manage their sickle cell disease, LaTia has been taught to manage her symptoms. It also helps that she has a lot of optimism and drive to do what she loves.

"I don’t really let it hold me back from my dreams and what I love to do," says LaTia.

In spite of the challenges her disease causes, she has her heart set on studying biochemistry in college — knowing full well that stress is one of the primary factors that can trigger her disease and send her to the hospital.

Regardless, she's choosing to aim high. “I want to be a hematologist and a marine biologist,” she says. "I expect it to be very stressful, but I’m just ready to take it on."

LaTia also hopes that she can use her passion for learning and knowledge to someday help other people like her.

There's no cure for sickle cell disease — only developments in pain treatment that can make the disease easier to manage. But she wants to help find a cure.

"Sickle cell doesn't only affect the patients. It affects the families too," she says. "No one in the family likes to see a child suffering from such a terrible disease."

"I'm doing it for the patients and for the families."

Though her disease is beyond her control, so far, LaTia has been able to do everything she wants — it's just more of a challenge.

Supported by the Aflac Center and Blood Disorders Center, with compassionate care and patient education and counseling, she has been able to chase her dreams with confidence.

Heading into her future, she's confident in her ability to keep on accomplishing. "I feel invincible," she says.

Ultimately, she hopes that finding a cure is within her reach. "I do a lot of spreading awareness through social media and things," she says. "I want people to be aware of sickle cell and maybe help make a change."

One thing she's certain of is that she'll be one of the people helping make that change, regardless of the obstacles in her way. "Sickle cell has made me feel down a lot, but you can overcome anything," she says. "That's what I've learned — that anything can be overcome."

To learn more about sickle cell disease or the Aflac Cancer and Blood Disorders Center, visit choa.org/fightsicklecell.

Heroes

Game-changing genetic editing just let one teenager 'dodge' sickle cell disease.

Chalk up another big potential win for science – it just helped one kid avoid some of the devastating effects of sickle cell disease.

Sickle cell disease is a chronic, genetic blood disorder that affects about 100,000 Americans. It can affect anyone, although it disproportionately occurs in African-Americans. It’s manageable with medicine and proper care, but can still be dangerous and extremely painful. It's a lifelong condition.

Or, maybe not. Because that last part — about it being a lifelong condition – might be changing.

A French teenager may have just dodged most of the effects of the disorder thanks to gene editing.

A worker preparing cells for gene editing research. Ben Birchall/PA via AP.

That's according to a March 2, 2017, report in The New England Journal of Medicine.

Sickle cell is caused by a single genetic typo in the gene that produces hemoglobin — an important blood protein. That typo can cause normally disc-shaped red blood cells to warp into sickle-shaped crescents.

On the right are normal-shaped red blood cells. On the left is one deformed into the classic sickle shape. Image from Sickle Cell Foundation of Georgia.

These can get trapped in small blood vessels, causing painful, sometimes dangerous blood clots.

The researchers behind the study used gene editing to install a typo-free copy of the gene into the DNA of some of the boy's cells.

A modified virus shepherded a copy of the normal hemoglobin gene into the boy's bone marrow stem cells (which produce red blood cells).

Now, more than two years later, about half of the boy’s red blood cells are carrying that normal protein.

"It’s not a cure, but it doesn’t matter," explained Philippe Leboulch, who helped invent the therapy, because the results were enough for the patient to avoid most of the effects of sickle cell.

Other gene therapy studies for sickle cell are also underway in Los Angeles and California.

The treatment is still preliminary work, but if it holds out in the long run, it could be a huge win for a lot of people.

In Indianapolis, a newborn's blood is taken to test for inherited diseases such as sickle cell. Photo from AP Photo/Michael Conroy.

"It could be a game changer," Oxford geneticist Deborah Gill told New Scientist. "The fact the team has a patient with real clinical benefit, and biological markers to prove it, is a very big deal."

In the past, researchers have had success fighting sickle cell with stem cell transplants, but finding a compatible donor can be difficult for many patients. Gene therapy, however, only needs one person — the patient.

Of course, there's still a ways to go before this could be widely available. But if it works out, this technique could help over 100,000 Americans live without the chronic pain of sickle cell. Which is the very definition of "a very big deal."