Her eyes close, her legs shake and her jaw muscles tighten and clench to fight the pain. She uses this method every time the medicine doesn’t work. The most recent pain put her in the hospital last week and before that left her in the hospital over winter break — Christmas and New Year’s Eve, she spent hospitalized.
Mix eight medications, more than 14 pills a day, a university course load of 12 credits and inconvenient hospital stays with the will to be a doctor no matter the cost, and you get 19-year-old biology major Jasmine Bailey.
Bailey was born with sickle cell disease (SCD) and is a case among many patients.
“Sickle cell disease is a term that describes a number of abnormalities of hemoglobin in the blood,” says the director of University of Miami’s Sickle Cell Center, Dr. Daniel Armstrong. “Sickle cell disease affects one in 800 African-American babies in the U.S., although it also occurs in individuals of Hispanic, Middle Eastern, and Indian backgrounds.”
Sickle cell disease can also be inherited as a trait that doesn’t really cause problems. The full-blown form Bailey has causes all the problems.
How it affects school
Bailey was in the hospital for an extended stay twice during the fall semester — school had only been in session for nearly two weeks when she was there the second time. Bailey was absent the first week of school this semester, after having been in the hospital on Christmas and New Year’s Eve.
“Pain is the most frequent reason that children with sickle cell disease miss school,” her doctor, Daniel Armstrong says. “The average child with sickle cell disease misses between 16 and 20 days of school a year because of sickle cell-related problems”
Some patients, like Bailey, are hospitalized monthly.
“This year was almost like an accomplishment I was trying to achieve. I would say to myself, ‘don’t go to the hospital, don’t go to the hospital,'” Bailey says. “I felt like I failed at that — granted, it wasn’t two days after moving in, like last year.”
The IV pump, and the heart rate, blood pressure and oxygen level machines beep and hum. Sometimes they have to stick her up to 11 times before a vein responds. Her most recent fluid IV was placed in her right thumb.
“You grow used to it, but it’s just the fact of hit and miss, and then they’re fishing around inside your skin with a sharp object, to pinpoint the vein, sliding it in the skin and out. Or when the vein blows, it’s like a mini explosion and the area swells immediately, and the vein can’t be used for IV,” Bailey says.
She makes her own attempts to go to the bathroom — she hates feeling like an invalid. Her IV follows like a sad puppy — “ball and chain,” she calls it. She’ll even decline use of her new wheelchair until it is absolutely necessary — even then she’d rather push it herself.
“People don’t understand the mental toil it takes on you being in a wheelchair,” Bailey says. “It’s almost like you’re inferior.”
Sickle cell disease can damage the hips, knees and shoulders, making it difficult for some patients to walk, according to Dr. Armstrong.
“Severe pain may also require short-term use of a wheelchair,” Armstrong says. “Also those individuals who have experienced a stroke may have motor difficulties that make it difficult to walk.”
During these hard times you will find a supply of graham crackers and peanut butter and jelly singles stacked up by Bailey’s bedside — comfort food.
How FAU helps
Two by two, visitors come and go freely. Some stay overnight, but there is no telling when she will be liberated. When she goes back to school she will be bombarded with more class work than she can handle.
For what she can’t do from her laptop in the hospital on what she calls her “weaker days” — days when she is being pumped with morphine and narcotic drugs around the clock, and can do little more than sleep — Bailey will find schoolwork in the cubby labeled with her name in the Office for Students with Disabilities (OSD).
“Through OSD I get accommodations that allow me to be excused and make up my work in an allotted time period,” Bailey says.
Ironically, she initially signed up to be a note taker but had to be admitted into the hospital immediately after.
Instead of being the note taker, Bailey needed a note taker.
“So far I had [note takers] last spring semester and the beginning of this semester,” Bailey says. “It’s a lot better to be with OSD than to try to explain this to your teachers on your own, because they provide a lot of services — they notify your teachers when you’re out and provide a range of accommodations.”
When the pain is tolerable and not too much for the campus clinic to handle, students with sickle cell disease lean on FAU’s Student Health Services. Student Health Services can only do so much, though, because the full-blown SCD requires a hematologist or
a blood specialist.
“We give them special consideration if they come to us, but when there are different possible complications with the sickle cell, we would most likely send them to the emergency room,” says Associate Director of Clinical Services and physician Carine Porfiri. “If [students] have full-blown sickle cell, they need IV fluids. We can watch them, but if they’re achy all over or feverish, we can’t mess around, just get them to where they can get the best care.”
FAU’s campus clinic sees less than 10 sickle cell patients per year, because most of them have their own blood specialists.
“Besides OSD I use the counseling center as a resource to help me cope with the social aspect of the disease, as well as the clinic to help me with check-ups and to write my prescriptions,” Bailey says.
No more medicine
The school pharmacy can’t give Bailey her actual medication because they don’t accept her insurance. Sometimes she has to go without it. Unfortunately she cannot always
get around.
“When I have to go without medication, it’s detrimental to my health,” Bailey says. “Some medications work on a time-release schedule, some of them can’t be stopped abruptly, some of them need to stay in your system.”
And there is no cure for sickle cell disease.
“You can’t treat the condition, only the complications when they occur. The painful crises can affect different organs in the body such as the gallbladder or spleen,” Porfiri says. “Because of poor oxygenation of red blood cells, breathing is also affected — resulting in the death or damage of an organ and painful blood clotting or crisis.”
Most medications taken are for the pain. Some patients take no medicine at all and some take several depending on their condition.
Still no independence
Bailey was in pain throughout her interviews. She responds with a nod of the head to some of the questions and softly says, “my legs always hurt.” She’s used to it.
The first and last time she had a job, spring semester of 2008, she worked a grueling, unfamiliar, seven-hour shift as a CVS Pharmacy cashier. The next morning she had to be rushed to the emergency room. She tried again a second time and was unsuccessful, so she had to quit.
Although the part-time job didn’t work out for Bailey, she manages to stay involved on campus.
“As far as extracurricular [activities], I’m involved in Black Student Union and I’m working on becoming a member of FAU’s chapter of Respect Check Protect (RCP), an HIV/AIDs awareness movement,” Bailey says.
Because Bailey does not have a car, cannot work a regular job and is cared for by her aunt, the tough times seem tougher.
“My educational expenses are paid for with financial aid and scholarships, but my aunt mainly takes care of everything else.”
In the genes
Bailey’s family is not new to dealing with disease — her mother passed away in 2000 due to lupus.
The right side of her Heritage Park Tower dorm room wall, closest to her bed, houses a wallet-sized portrait of her mother. It was taken the same year she passed away, on picture day at Royal Palm Elementary where she was a third grade teacher, Bailey relays.
The photo is her equivalent of a motivational poster.
“I put it there as a motivation because she was enthusiastic about learning and she would want me to succeed — it’s my motivation to keep going,” says Bailey softly, while cleaning the mini refrigerator in her room. “When I look at it most times, just the memory makes me sad because I wish she were physically here to see me as a college student.”
Every time her mother’s death date or birthday rolls around, the picture comes off the wall and lies on the bed beside her. She pushes on despite the pain.
“A lot of things keep me going, like, my desire for success, I want to be somebody, you know. My family members, I want to make them proud. And for other people who have sickle cell who are less fortunate than me and can’t do it, I do it for them too,” Bailey says. “I do it for my mother, because she was big on education and was just always being the best type of person you can be, so I know if she was here, she would want me to keep going and not quit. I want to continue her legacy,” Bailey says. “Her legacy is just making sure kids stay grounded in education and grow up with morals and values, and don’t just quit at the first sign of obstacles.”
Someone to lean on
Her room smells of heavy, alcohol-based 99.99 percent germ-killing antibacterial hand sanitizer and thick, industrial, hospital linens that can turn the strongest of stomachs. The digital clock above the emergency room bed counts the minutes and hours her friends will not get to sleep — they brought her to the hospital again and they leave at
almost 3 a.m.
Close friend and old dorm floor mate Charoy Thurston recalls a time when this was her.
“I have been at the hospital with Jasmine anywhere from three or four hours to nearly eight hours. I remember we went late one night and I came back in time to take a shower, eat something, and go to class,” Thurston says. “It did disrupt my schedule and it usually does, but I will always make time for a friend in need.”
And after rating their pain on a scale from one to 10 and practicing finding their happy places to divert their attention from the pangs, most “sicklers” just want to know their friends are there.
“My friends are very supportive and understanding toward the differences that we possess. Between my family and friends, I have something of a network to fall back on,” Bailey says.
Jessica Anderson, a University of Florida student and Bailey’s best friend or “bud,” as she is affectionately named, has been there through it all.
“On several occasions I have had to go with Jasmine [Bailey] to the hospital for pain crises or even just for regular appointments,” Anderson says. “The first time I stayed with Jasmine [Bailey] in the hospital was a defining moment for me.”
Anderson was there during the Christmas and New Year’s Eve stays. Instead of gifts piling out from the center of a Christmas tree, they were sprawled across too-familiar hospital linens. The presents were accompanied by family and close friends.
“It’s hard to understand any illness — let alone sickle cell, which is a very unpredictable and painful disease — so to stay in the hospital with her and experience the difficulties she has with IV’s and blood transfusions and various medications, in conjunction with her added school stress, I got to see just how phenomenal of a friend I have. And I was able to do one important thing, and that is gain perspective,” Anderson says. “Nobody, especially those people with illnesses, wants anything more than for you to understand their side of the story, and that’s what I was able to do.”
Bailey has always made it a point to watch how people treat her when she’s sick — who will be there and who won’t. Sickle cell disease, as well as any other illness, can be a burden and that is the last thing Bailey wants to be.
“There was a point in time when it was really depressing to me,” Thurston says. “I would never want to not have my friend in my life, but her condition did put some stress on me and I felt bad because I know that this is one thing she does not want to be to others: a burden.”
Because the disease works like a clock, Bailey will be chained up again, all too soon.
Log on to www.sicklecelldisease.org for more information on sickle cell disease.
What is Sickle Cell?
According to the director of University of Miami’s Sickle Cell Center, Dr. Daniel Armstrong, sickle cell disease (or sickle cell anemia) is a genetic disease and blood disorder that affects one in 800 African-American babies. It is characterized by red blood cells that transform to an abnormal, half-moon shape.
The Sickle Cell Disease Association of America says the U.S. has over 27 million cases of SCD, with 1,000 babies born with the disease each year.
How to Get Help at FAU
Office of Students with Disabilities
Aids FAU students who may need extra help due to learning disabilities by providing note takers, informing teachers of their disabled students in order to guarantee accommodations and other services.
www.osd.fau.edu
(561) 297-3880
Counseling Center
Available to all FAU students free of charge for assistance in dealing with personal problems.
www.fau.edu/student/broward/counselingbroward
(561) 297-3540
Student Health Services
Takes care of the basic needs of a student with SCD by monitoring them. Anything past that, such as a crisis, calls for specialized care.
www.shs.fau.edu
(561) 297-2276
How to Get Help in the Community
Sickle Cell Foundation of Palm Beach
www.sicklecellpalmbeach.org
Family Support Groups
(561) 833-3113 for more information
Broward General Hospital
www.browardhealth.org
Provides in-house activities, like patient counseling, support groups for teens, parents and adults, stress management and family counseling, through the Sickle Cell Day Treatment and Wellness Center that serves patients 18 to 28 years of age.
(954) 759-7400 for more information
How Can You Help
-Give blood at a local blood drive. FAU does them year round. The next blood drive is on March 9-10 all day on the Boca Raton campus
-Sign up as an organ donor, because sickle cell patients may need transplants.
-Give money online to an SCD research center to help find a cure.
www.sicklecelldisease.org/giving/giving.php
Not the Only One
Sophomore Jasmine Bailey isn’t the only one with SCD at FAU. Political science and public communications double major Collene O’Reilly was also born with the disease, as were her five siblings.
Unlike Bailey, her school year is only spotted with hospital stays, even though O’Reilly had a similar medical history. Getting to know her body and realizing when her immune system is shutting down has helped her to sometimes avoid getting sick.
“I don’t go to the hospital as often as I used to. Growing up, my mother tried not to rush us to the hospital every time we had a sickle cell crisis, but even then I would go to the hospital at least once a month,” O’Reilly says. “Growing up it got a little bit better with hospital visits spreading out to once every two months, and now I go to the hospital with severe pain at least two to three times a semester.”
Her mother even took O’Reilly and her siblings to a hypnotist, who taught them how to suppress the pain by not concentrating on it so much. O’Reilly doesn’t have the same medicinal cocktail as Bailey.
“Currently I am supposed to be taking my medicines on a regular basis, but I only take them when I need them because I want to encourage my body to take care of itself so I don’t have to constantly depend on my meds. It tends to make me more sick,” O’Reilly says.
Not a slacker by nature, you can find O’Reilly front and center at a Black Student Union meeting with no signs of disease, unless you know what jaundiced eyes look like. Her participation with on-campus activities are as high as her motivations to stay as healthy
as possible.
“I can’t be involved in any sporting activities like I used to be, but I am very involved in many organizations on campus,” O’Reilly says. “Being director of Black Student Union and Multicultural Programming, a liaison for the Freshman Learning Community, president of the Learning Community Liaison Program, member of National Society for Collegiate Scholars, and an active member of Caribbean Student Association and Konbit Kreyol.”
