Breakthrough - Osteogenesis Imperfecta Foundation

Spotlight
Physical therapy brings relief from pain for mother of two
Kathleen Kowis has what she calls “severe Type I OI.”
In fact, when her type was diagnosed through genetic
testing, the results suprised her family and doctors, who had
placed her as a more severe type based on her symptoms
and medical history.
“In spite of that, I’m not sure I did everything I could do
growing up to stay healthy,” Kathleen confessed. “I guess
the mindset was ‘if I’m not breaking, why see a doctor?’”
When Kathleen was near the end of her second pregnancy,
the pain in her
knee was so bad she
couldn’t stand, much
less walk, maintain her
household, and care for
her infant daughter.
“It was probably the
additional weight I was
carrying due to the pregnancy,” she recalled, “but I had also
fallen and fractured that kneecap 5 years earlier.”
Complicating matters, a job opportunity for her huband,
Greg, took their brand-new family to N.C., too far from
extended family for them to be able to receive regular
support and assistance.
Visits to local doctors unfamiliar with OI were not reassuring.
One looked at her x-rays and informed her she had
“83 year-old looking knees.” She was told to stop walking
on it, not to exercise, and to consider having a knee replacement
surgery that couldn’t guarantee results.
“It was frightening,” Kathleen said. “When Sean was
born, the pain was bad enough that I was too scared to
carry him. I was dragging him around the house in his
bassinet!”
By the time her knee pain was bad enough to send her in
search of help, she had tendon and ligament damage as well
as damage to the bones in her knees.
Kathleen traveled to Baltimore to meet with Dr. Shapiro
(a member of the OI Foundation’s medical advisory council)
and a group of specialists at the OI Clinic at Kennedy
Kreiger, who recommended physical therapy as a means of
controlling the pain.
“It turns out there were a series of problems, and not just
in the knee,” Kathleen said.
One of the biggest contributing factors to the knee
problems turned out to be the curvature in her legs due to
repeated micro-fractures through the years. The bowing
was turning her foot, impacting her gait and adding stress to
the knees.
“A simple insert in my shoe from the physical therapist
made a world of difference,” Kathleen said. “In fact, when
I walk barefoot— without the special insert— I can notice
the increased pain immediately.”
However, her physical therapy was more involved than
just the insert. Kathleen spent months receiving special antiinflammatory
treatments using electrodes to draw the
medication to the right spots in her knees. She also was
taught a series of mild exercises to help strengthen the
muscles supporting her knees.
“It could have been much worse, and I might have
resorted to surgery,” she said. “Nobody was giving me any
options other than
that until I met with
“I never saw a physical therapist as a child, and
believe it really would have made a difference.
I’d like to assume all kids with OI today have one.”
Dr. Shapiro and the
team at the OI
Clinic.”
She said hard
work brought her
success in managing
the pain without surgery. It required lots of research, selfeducation
about the issue, and three or four opinions from
different doctors before she was ready to make a decision
about how to treat the pain.
“I learned through all this that you have to stick to it and
not give up when you come across a medical problem. You
simply have to keep fighting until you find someone who is
willing to work with you,” she explained.
“Surgery is not necessarily a pain management tool,” she
said. “Once I found someone knowledgeable about OI and
willing to listen to what I’d learned, more options were
available to me. It was almost like I had to be my own
health advocate.”
Today Kathleen relies on yoga to control stress and water
therapy to stay strong, takes the occasional anti-inflammatory
medication when needed, and regularly meets with a
physical therapist.
“I never saw a physical therapist as a child,” she said,
“and believe it really would have made a difference. I’d like
to assume all kids with OI today have one.”
She believes that some simple exercises and early interaction
with “the right people” could make all the difference
in whether or not children suffer from joint pain as adults.
“But most of all you have to know yourself, and search
for as many options and as much information as you
possibly can,” she said.
The pain’s not completely gone, and Kathleen has to be
diligent with sticking to her exercises and using the shoe
insert, but she’s keeping up with her two pre-schoolers,
Sean and Rachel, now 3 and 4 years old.
“Because I didn’t give up, I’m now walking, taking the
kids to school, shopping, keeping up with the house... I
consider myself lucky,” she said.
Breakthrough Winter 2004 Page 16