JUVENILE ARTHRITIS
AWARENESS MONTH
BY LISA FIELDS
EIGHTEEN MONTHS after restaurant
owner John Bucci Jr. of Philadelphia was
diagnosed with leukemia, he needed a bone-marrow transplant. His sister was tested,
but their genetic tissue-type markers didn’t
match, and Bucci didn’t have children who
could be potential donors.
Fortunately, Bucci’s doctor referred him
to the National Marrow Donor Program’s
Be The Match Registry ( bethematch.org),
which connects patients who have life-threatening blood cancers like leukemia
and lymphoma to people whose genetic
tissue-type markers may be compatible.
“Patients only have about a ;; percent
chance of finding a full tissue-type match
in their family,” says Mary Halet, a Costco
member and director of community engage-
ment for Be The Match in Minneapolis.
“When they don’t have a match, they turn
to the registry.”
The bone-marrow donation that Bucci
received from a registry member in ;;;;
cured his leukemia. “Every day I wake up,
I’m lucky to be here,” he says.
Because Bucci is of Italian ancestry, his
chances of matching through the registry
were greater than if he’d been African-American, Hispanic, Asian or multiracial.
Currently, more than half of those registered
with Be The Match identify as white. Only
; percent identify as African-American.
Another ; percent identify as Hispanic,
; percent as Asian and ; percent as multiracial. The challenge has been to increase
the diversity of the donor pool.
To help attract minority donors, July is
designated as African-American Bone
Marrow Awareness Month.
CJ Logan joined the registry when he
played football for Villanova University.
Two years later, he became a match.
“I’m African-American, and it’s very
hard to find a match,” says Logan, a finan-
cial planner in Boston. “They said, ‘Think
it over,’ but I didn’t really have to think about
it. What if it was my mother or my sister? I
would hope that someone who had the
opportunity to make a difference would do
so, so that’s how I approached it.”
Logan had marrow removed from his
hip during outpatient surgery. Some donors
have bone-marrow stem cells collected
nonsurgically: Blood is removed from one
arm, run through a machine that harvests
stem cells, then returned to the other arm.
Research shows that both procedures are
equally safe for donors, and the success
rate of bone-marrow stem-cell transplants
has improved significantly due to treat-
ment advances.
About one out of ;;; registry members
donates. There are no lasting effects from
the procedure. “Bone marrow replenishes
itself,” Halet says. “In about six weeks, your
system is fully restored.” C
Lisa Fields is a New Jersey–based freelance
writer who covers health and psychology.
Matchmaker:
donating bone marrow
ABOUT ONE child in every thousand
develops chronic arthritis. Nearly
300,000 children in the U.S. under the
age of 18 have been diagnosed with
some form of arthritis, according to the
National Institutes of Health.
Juvenile arthritis (JA) is typically an
autoimmune disorder, meaning the
body’s immune system, which usually
fights disease, instead attacks healthy
cells and tissues. Genetics may play a
role, but researchers still seek a cause.
Diagnosis
There is no dedicated test to confirm
a diagnosis. Doctors instead rely on a
review of symptoms and family history
in addition to a thorough physical exam,
lab tests and X-rays.
Signs and symptoms
There are several types of JA, each
with a distinct set of symptoms. Some
types may affect the musculoskeletal
system more and not the joints. Other
types may involve the eyes, skin or
digestive tract. Here are some of the
things to watch for in your child:
• Affected joints in the knees,
hands and feet.
• Persistent joint swelling,
pain and stiffness.
• Limping.
• Persistent high fever.
• Skin rash.
• Eye pain, blurred vision.
• Swollen lymph nodes.
• Symptoms may be worse after sleep.
• Symptoms may flare up, then
recede and flare up again.
Treatment
There is no cure for JA, but if it is
diagnosed early and treated aggressively, remission may be possible.
Relieving inflammation, managing pain
and improving quality of life are the
goals, with medication, diet and physical
activity as components of treatment.
Resources
Search for additional information at
these websites:
• Arthritis National Research
Foundation, curearthritis.org.
• National Institute of Arthritis and
Musculoskeletal and Skin Diseases,
niams.nih.gov.—David Wight
FOR YOUR HEALTH
©
G
RE
EN
_0
1
; W
AY
HO
ME
S
T
U
DI
O
/
S
HU
T
T
ER
S
TOC
K
OUR DIGITAL EDITIONS
Click here to watch a short vignette
featuring bone-marrow donors. (See
page 8 for details.)
HOW TO REGISTER
BE THE MATCH has connected 80,000
donor-recipient pairs since 1987. If
you’re between the ages of 18 and 60,
visit Be TheMatch.org to join.
You’ll receive a mail-in kit with cheek
swabs, which are processed to provide
your tissue-type information. If you
match someone, you’ll be contacted.
“It’s just a swab of your cheek, and
it can save a life,” bone-marrow recipient John Bucci Jr. says. “It’s not even
giving money—it’s giving of yourself,
and that’s even more beautiful.”—LF
OUR DIGITAL EDITIONS
Click here for a video about
juvenile arthritis research. (See
page 8 for details.)
