Coping With a Health Crisis, One Click at a Time

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.

Now that's a great website. It's amazing how much people really do care, and with so many well wishers it makes todays world a better place. The folks at FreeTense.com have helped me, as well as my coach from healthyvibesuk.com The web is getting personal and helpful. I've learned to meditate on the web as well as found a great place to donate my car Autogiver.com and get tax money back. The web has been such a useful tool for me!