The skanner., June 05, 2013, Page 3, Image 3

Local News
Lupus
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lems. In particular, Black women with lupus
have more problems with seizures, strokes
and dangerous swelling of the heart muscle.
Overall, nine out of ten adults diagnosed
with lupus are women aged 15-45.
Matz experienced symptoms of lupus,
including a mild stroke, for at least 20 years
before being officially diagnosed in 2012.
She says she had a lot of fevers as a child,
which she later found out was an early sign
of the disease. When she was 13 or 14, she
had kidney issues, which required special
medicine.
From 1991-95, her and her husband had
three children, each pregnancy was high
risk, and finally after her third she was
advised to not have more. Although high-
risk pregnancies and miscarriages are also
considered early signs of lupus, no one
made the connection during this time either.
About a year after the birth of her daugh-
ter in 1995, Matz suffered a mild stroke.
Her mouth was the only part of her body
that she could move. Doctors ran a number
of tests and said her condition was lupus-
like, but began rigorous treatment for her
symptoms.
Matz was in college in California at
the time and had to put her education
on hold as she went through physical
therapy and learned to walk again. The
family didn’t have a lot of money and
chose to move to Oregon in 2001
because it was cheaper to live and
that’s where her husband’s family was
located.
The first year in Oregon was really
difficult, she said. She switched to
BlueCross BlueShield and found her insur-
ance to be expensive and ineffective. Even-
tually, she had to choose between paying for
her lupus medication and medicine to treat
her children’s asthma. Matz chose to take
care of her children and her condition wors-
ened.
After her husband got hired by the state in
2003, she switched to Kaiser and at first she
did not connect with doctors. Coordinating
care was too hard to do while also raising
her children and working so she chose not
to see a rheumatologist.
In 2010, she had a bad flare and had to
have emergency surgery. Matz was so ane-
mic that she met the criteria for a blood
transfusion. While this surgery normally
takes two hours, doctors found a tumor
attached to her uterus so it took five. After
the surgery, doctors told Matz they were
surprised she was even standing.
Following the surgery, she was again
referred to a rheumatologist to manage her
lupus, but she felt invisible and unheard.
“Doctors aren’t always as sensitive as
they could be or should be,” says Matz. “I
think there are cultural nuances that they
aren’t aware of. I think that if you’re young
and brown, it makes it harder.”
This rheumatologist put her on Plaquenil.
30 days into the new medication, she began
getting bad headaches, dizziness and spikes
in her blood pressure. During one episode,
her primary doctor had her taken to the hos-
pital by ambulance. Her regular rheumatol-
ogist was out that day and a stand-in said
that this was an issue previously seen in
Plaquenil and requested Matz get off of the
drug.
Her regular rheumatologist disagreed.
One of the contributing issues, according
to Matz, is that that United States doesn’t
have a standard of care for lupus like the
international community. There also isn’t
coordination of care, which means lupus
The Walk to End Lupus Now, at Oaks Park on June 2
“African American women are really (skep-
tical) and for good reason. We have
Tuskegee. We have Henrietta Lacks. We
have a long history of the medical system
abusing people of color. It doesn’t excuse it,
but it makes it understandable.”
Her worsening symptoms and need to find
a trusted primary doctor and allergist/immu-
nologist in Kaiser was what inspired Matz
to begin reading the LFA website and start a
support group. She read through message
boards, did her own research on lupus
through resources on the site, and
finally made the decision to switch
rheumatologists.
LFA has partnered with the Ameri-
can College of Rheumatology, the US
Department of Health and Human
Services, and other organizations to
create curriculum called the Lupus Ini-
tiative - Eliminating Lupus Health
Disparities. According to the LFA, it is
designed to improve the diagnosis,
treatment, and management of lupus in
patient populations disproportionately
affected based on race, ethnicity, and gender
through the education of medical profes-
sionals in training and in practice. One of
the hopes of the Lupus Initiative is that
addressing the health inequities of lupus
will help to address other health inequities
that are endemic to the poor and people of
color.
Before Matz began working with her new
rheumatologist, she had an honest conversa-
tion about her last experience. She says she
was on board when the new doctor suggest-
ed trying Imuran again because this doctor
listened to her fears as well as feedback
from other doctors.
Matz has been taking Imuran every day
since and has had blood work done consis-
tently. While she hasn’t had too much nau-
sea she says the fatigue has been pretty
intense. The medications have improved her
ability to eat, walk and feel more human
again, she says.
Matz hopes it continues to work but
understands there are side effects to
chemotherapy. Being in the presence of
people who are sick or who have just taken
live vaccines can be very dangerous for her.
When her daughter had H1N1, Matz was
sick for an extended period of time and lost
ten pounds in one week. She notes that it’s
not usually the lupus, but infection or kid-
ney or heart failure that kills people.
“If someone gets me sick I could die from
that,” says Matz. “I could do everything
right, and still not live.”
She also notes that lupus isn’t an inexpen-
sive disease. It’s estimated to cost $20,000 a
year, she says. In addition to that, Matz says
most patients will go through four to eight
doctors before they are even diagnosed.
Not everyone has the luxury to afford all
of the medications and various therapies
that lupus can entail and that’s why Matz
says she and others are walking Sunday.
“Just by having lupus you have a higher
risk for cardiovascular disease,” she says.
“You have a higher risk of having hyperten-
sion. You have a higher risk for having kid-
ney failure. Life becomes precarious and
more precious all at once and we need allies
to not only hold our hands, but to fight for a
cure.”
To see more photos from the “Walk to
End Lupus Now,” go to The Skanner News
Facebook page.
market, which includes imported goods.
Gifford says he can’t charge as much for
his tee-shirts at this spot, even though he
hand dyes everything he sells. That was at
the crux of his dispute with the Saturday
market board. Members of the product
committee told him they’d received a com-
plaint that his tee-shirts were simply bought
Gifford calls vending at Saturday market,
“an Animal Farm, situation.” After he was
pushed out another tie-dye artist who had
left the market returned, he said.
“You’ve heard the expression judge, jury
and executioner. Let’s add to that com-
plainant, prosecution and witness. These
people who were going to judge me were
the ones who complained about me; they
investigated me; they prosecuted me; they
juried me; they executed me. They kicked
me out of the market.”
Groves has another reason for feeling tar-
geted. Three years ago the board slapped
him with a series of infraction notices,
alleging he’d left his booth 5 minutes early
and parked his vehicle in the street before
the allowed time of 5 p.m. Those com-
plaints were dropped after a photo of
Groves’ parked vehicle was shown to be
taken after 5 p.m., and a vendor survey
found most believed the rules were unclear.
Since, then Groves’ relationship with the
board has remained cool. Now, with an
eviction notice from the board and no sign
of willingness to compromise, he says he
needs to find a lawyer to take the case.
Black women with lupus have
more problems with seizures,
strokes and dangerous
swelling of the heart muscle
patients have to coordinate and manage all
of their different doctors and medicines on
their own.
Ultimately, Matz didn’t go back to
Plaquenil, but was put on prednisone. How-
ever, she was still experiencing problems
like vision changes, ulcers and rapid weight
loss coupled by an inability to get hungry so
the rheumatologist suggested Imuran.
Matz didn’t take the Imuran and when she
went to get blood work done, her white
blood cell count was low. The rheumatolo-
gist thought that it was because of the med-
ication but Matz didn’t tell her she wasn’t
taking it.
“I didn’t tell her I wasn’t taking the Imu-
ran because I didn’t like her and I didn’t
trust her, which is not good,” she says.
Spices
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needed to ensure high product standards.
Saturday Market, which leases its space
from the city’s Parks Department, is dedi-
cated to promoting artists and artisans who
hand-craft unique products.
“Nine other vendors have taken the work-
shop visit and passed it,” Verhoeven said,
then clarified that one business has yet to
submit required documents. “He’s been
notified and re-notified and now he’s here in
disregard of the No-Sell notice. He’s disre-
garding it.”
To get his spot back, Verhoeven said,
Groves must complete the workshop visit
and show his year’s worth of receipts. The
rule does not require Groves to reveal his
trade secrets, Verhoeven said.
“You don’t have to show your recipe.”
Saturday market has rules about every-
thing from incense and smoking (banned),
to introducing new products (a committee
must approve each one). One soap vendor
said body care product vendors also are
required to have workshop visits. But they
did not have to show a year’s worth of prod-
uct receipts.
Groves says the market board is dominat-
ed by a tight cabal who invent rules so they
can force out anyone they don’t like. He
says two other artisans – a cupcake baker
and a couple who make tie-dye t-shirts—
were pushed out. And as one of just two
African Americans who currently sell at
Saturday market – the other business is My
Brother’s Barbecue – he feels unfairly tar-
geted.
‘You’ve heard the expression judge, jury and
executioner. Let’s add to that complainant,
prosecution and witness’
“It’s a policy they made up this year,” he
says. “They want to see everything.
They’ve never done this before and I think
they are doing this to get me out.”
Some might say Groves is taking this too
personally? Not Steven Gifford. Gifford
says he was evicted from the market for no
good reason.
Cross over to the other side of the light-
rail tracks and you can find Gifford’s stall.
He moved his tie-dye t-shirt business from
Saturday Market to the Skidmore Fountain
from a catalogue. They wouldn’t supply
any more details, he says, but asked to visit
his workshop.
During the visit, Gifford said the board
members pronounced the workshop too
clean to be a real dye space, and refused to
look in his product cabinet.
“They said the floor was too clean,” he
says. “But they weren’t even looking at the
area where I do the work. They said I was
lying. They were willing to do anything to
get me out of there.”
June 5, 2013 The Portland Skanner Page 3