Patient Web sites aren't just found on services set up to host them. And, I think there are more benefits not covered in the artcle. I have an extremely rare genetic condition called Hermansky-Pudlak Syndrome. It's a rare type of albinism that also causes a bleeding disorder and in my case a Crohn's-like colitis and pulmonary fibrosis. Several of us HPS'ers now have sites, and each one has a different flavor. Mine has become a sort of defacto news site for the HPS community. Others are more personal in nature. Yes, it allows me to tell extended family and friends how I'm doing. It also, however, allows me to document in a personal way what it's like to live with a syndrome most doctors will never know about. It gives us as patients with rare diseases a voice to express our unique experiences. And, it can give hope and a realistic outlook to those newly diagnosed wantng someone else to relate to. My site is at: www.heatherkirkwood.blogspot.com.
Coping With a Health Crisis, One Click at a Time
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The leading sites have taken different paths to providing services. CaringBridge is a nonprofit business with a $2 million annual budget that last year relied on $1.6 million in donations, according to federal records. Mehring said it's company philosophy to rely on users who appreciate the service to support it.
CarePages is a privately held business whose parent company, TLContact Inc., was acquired last year by Revolution Health. The site licenses 700 hospitals nationwide and accepts screened advertisements to support its work, Langshur said.
In October, the Langshurs, along with Mary Beth Sammons, published a book gleaned from patients' experiences: "We Carry Each Other: Getting Through Life's Toughest Times."
There's no question the patient Web sites have caught on. CaringBridge staff estimate that a new site is created every 10 minutes.
The Web sites are most active in the early weeks of an illness, but they remain useful after the health crisis has passed. Katie Pagano's parents post about once a month, but since she entered remission, it's mostly the life of a normal preschooler.
"We truly believe we're done with this and this is nothing but a speed bump on Katie's road of life," said Matt Pagano. "I know my little kid is not sick anymore."
Lasting testament
When the outcome is not good, the Web pages can become an important memorial for those who remain — and a testament to the patient's legacy.
That was true for Miles Levin, the Detroit teenager who gained national fame last year after he blogged about his experience with a rare pediatric muscle cancer. The 18-year-old chronicled his feelings and philosophies on a CarePages site that attracted some 25,000 followers.
"It meant absolutely everything," recalled his mother, Nancy Levin, who has begun her own site. "Miles always said, 'I'm not scared of dying; I'm scared of dying without an impact.'"
Months after Miles' death in August, visitors continued to take comfort from his words. By the end of the young man's life, his CarePages site had become a vehicle of mutual support.
"Miles found deep and profound satisfaction in knowing he had helped others," Nancy Levin said. "It was his way of giving back."
© 2008
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