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Feature Story

Kathryn Campbell is just one of the many thousands of children who benefited from adoption. Adopted from India at age 4, Kathryn was given a chance not many children in India get. Although born with a visual impairment and albinism, her parents taught her not to let her disability get in the way of her dreams. And she didn't.

She studied Political Science at Mary Baldwin College, maintaining a very high GPA throughout her college career. After graduation she hoped to go on to Graduate School, with aspirations to become a high school or college professor and perhaps run for Public Office. At one point she also considered becoming a lawyer.

Two years ago, however, Kathryn was forced to put her plans on hold. After experiencing severe abdominal pain constantly for an entire day, she was rushed to the hospital in July 2006. Two nights and an appendectomy later, she returned home feeling good as new.

But one week later she was back with the same pain as before, only this time she couldn't keep any food down. She underwent countless tests, but they came back normal. Every doctor she saw was stumped.

After 12 days of frustration, during which Kathryn remained in the hospital because she was unable to eat, her family began doing research on their own and discovered Hermanksy-Pudlak Syndrome, or HPS, an extremely rare form of albinism that is characterized by a bleeding disorder, lung disease, and inflammatory bowel disease. All the symptoms matched perfectly with Kathryn's and explained some strange medical problems she had experienced in the past, including severe bruising from common bumps and falls, abnormal bleeding from minor cuts, and her consistently low weight of just 89 pounds.

But unfortunately, a name was not enough. HPS is so rare most doctors haven't evmy en heard of it and have no idea how to treat it. So Kathryn's family contacted the National Institutes of Health, which has several research protocols devoted specifically to HPS. After officially diagnosing her, the staff at NIH gave the doctors wisdom and guidance as to what to do for Kathryn, and things began moving forward.

Despite this, Kathryn stayed in the hospital for almost a month, being fed through an IV because of her digestive issues. She admits that it was very hard.

“What brought me through was family, friends, and God,” she said.

Kathryn and her family are devout Christians who relied on prayer, both personal and from friends, as a way to cope with the difficulties she experienced in the hospital.

Another thing that helped was Kathryn's blog, which a family friend set up shortly after Kathryn's second hospital stay. The blog provided an easy way to update people on what was happening, without tying up the phone lines, which needed to be left open for Kathryn's doctors. It also allowed Kathryn's parents, Paul and Dawn Campbell, to get a little rest instead of talking to every concerned person who called.

“It brought people... from as far away as Brazil and Canada [who] were praying for our family,” Kathryn says. The blog also gave Kathryn contact with the outside world, which she badly needed after being in the hospital for so long.

Kathryn was released from the hospital in October 2006. She was 22 at the time. Since then, she and her family have embarked on the up and down battle that is Hermansky-Pudlak Syndrome.

One of the most difficult things about HPS is its unpredictable nature. This is especially taxing on an ultra-organized person like Kathryn.

“The most frustrating thing is that I can never have security when I'm planning,” she says, “as much as people with chronic illnesses say it doesn't affect their life, it does. Really my life is centered around HPS. My day-to-day life, my activities, my future goals, etc [are all affected by HPS].”

For now at least, things appear to be looking up. The good spells are getting longer and the bad times are becoming shorter and less frequent. She still has to monitor her calorie intake and be very careful of quick or forceful movements (she once broke a rib just from sneezing), and she now takes 20 medications, vitamins, and minerals per day. But she has a very committed medical team of eight doctors she sees regularly. She also has not had a hospital stay since February 2007.

And, as always, she tries not to let her condition get in the way of her dreams. She received her B.A from Mary Baldwin in April and starts a job this month at the Blue Ridge Independent Living Center, where she'll be the Independent Living Coordinator. Both of these things have been goals for a very long time.

She received the call on September 4th, which was also her 24th birthday. Later that day she wrote in her blog: “I am smiling right now thinking of how much fun the Lord had surprising me with the news of a new job on my Birthday. God could have chosen any day this week for the executive director to call, but He used today to bless me in a very big way. Praise to the Lord Almighty!”

Kathryn also hopes to be on a medical committee and possibly serve as a patient advocate one day.

At this time there is no cure for HPS, but NIH conducts on-going research, and new medical discoveries are being made constantly.

“I've learned so many life lessons, helped so many, and been able to meet so many people that I wouldn't have otherwise,” Kathryn says, “Yes, I've wished I didn't have HPS at times, but that feeling never lasts.”

Kathryn lives in Botetourt County with her parents, older brother, and younger sister. For more of her story go to www.campbellfamilyjournal.com or www.kathrynskeepsakes.com