Gaucher Community News - National Gaucher Foundation

The intense part of her marathon training began in
early July of this year, running four days a week
and cross-training another day. She was religious
about beating the summer heat so she was
pounding the pavement before the sun appeared
in the eastern sky each scheduled running day.
Needless to say there were a lot of bagels and
bananas consumed in our house, not to mention
pasta. Carbs, carbs, carbs!!
Shauna Mangum
running the 2009
Chicago Marathon. and
posing for pictures.
My Overachieving Wife Amazes Me
Submitted by Wayne Mangum
After years of excessive bleeding, a swollen
abdomen, fatigue and bone pain in her thighs
and hips, Shauna was diagnosed with Type III
Gaucher in June of 1995 at the Mayo Clinic
in Scottsdale, AZ. Mind you, it took almost
five years to diagnose what was causing all of
the above. That’s a lot of biopsies and blood
work. If you’re reading this you’re well aware
of the roller coaster ride involved in a Gaucher
diagnosis. In 1999, after a victorious battle
versus our insurance company, she finally started
receiving infusions of Cerezyme.
Okay, back to the over achieving stuff. Shauna
is working on her Bachelor’s Degree in Nursing
from Eastern New Mexico University, she’s
a gourmet cook, leads a bible study once a
week, a mom of four children ranging in age
from 15 to five, and wife of me (well maybe
five kids.) In her spare time she ran the 2009
Chicago Marathon, 26.2 miles, without, the aid
of Cerezeyme due to the shortage that sprang up
this summer. Her last shipment of the drug was
early August.
11
The mileage she ran was as little as 19 miles a
week in June and climbed to as much as 40 miles
in late September. Finally, two weeks before
the marathon, the training schedule lessened in
mileage, on the mileage allowing the body to
recover from the abuse of training. It was great
for me because the fewer miles she ran meant that
she was able to get back from her run and have the
coffee ready by the time I rolled out of bed!
Three hundred fifty miles, four pairs of shoes and
numerous purchases of blister prevention devices
later, race day arrived. October 11, 2009 holds a
special place for nearly 35,000 people. That is the
number of runners that braved the near record low
temperatures that set off to prove they had what it
took to never quit in the face of adversity.
Well, I’m thrilled to tell you, my wife is not a
quitter, although at about mile 17 she was feeling
the effects of the Cerezyme shortage and a case of
the flu she picked up three days prior to the race.
She crossed the finish line with a time of 5:08. I
am so proud of her. All things are possible with
a dose of determination and a lot of faith. She
proves it over and over.
Shauna really is, the best there is.
Notice to Gaucher Treatment Locations
Patient Meetings
If your treatment center would like to have a
patient meeting, please contact us at
ngf@gaucherdisease.org or 800-504-3189.