Online Tools for Patients
November 11, 2013
Thanks to the Internet, mesothelioma patients have more tools at their fingertips than before. Health information, survivor stories and emotional support are just a click away, as are lighthearted ways to take your mind off treatment.
Naturally, it’s important to make sure the websites you visit provide accurate medical research, and don’t ask you to pay to access their services. While many fundraising sites do a great deal of good, educational materials should be free to read, print and share with family or friends. Once you’ve found a reputable site, you may wish to bookmark it for easy access in the future. It will save you time searching the Web for it again.
Not sure where to get started? Here are some of our favorite online tools for mesothelioma patients:
So maybe you’ve heard of this one. (You are here right now, after all.) But have you taken the time to explore all of the sections at Asbestos.com? In addition to information about diagnosis and treatment, our staff publishes other valuable content, including:
- A caregiver’s column written by Lorraine Kember who lost her husband to pleural mesothelioma.
- A survivor’s perspective written by Kasie Coleman who continues to defy her peritoneal mesothelioma diagnosis every day.
- A health news and views banner that highlights recent research in an easy to understand manner.
- A doctor profile section to help patients learn more about their care provider’s experience and approach to mesothelioma treatment.
- A Wall of Hope featuring inspiring stories from the rest of the mesothelioma
Of course, there’s also a designated veteran’s section for military men and women who need information specially tailored to their position.
Written by a U.K. blogger, this site chronicles Janet Egerton’s journey with malignant pleural mesothelioma. Jan updates the website several times a month, occasionally multiple times a week, providing an honest discussion about the physical and emotional realities of treatment.
Not only is her insight relatable and inspiring, but it’s also living proof that life can be just as enriching after a diagnosis as it was beforehand. Jan travels frequently with her husband, dotes on her loyal pups and continues to work in her office while taking care of her health.
Published by the National Institutes of Health, Clinicaltrials.gov is a phenomenal resource for patients who are interested in experimental treatments. Although it’s not just for people with mesothelioma, there’s a regularly updated list of mesothelioma drugs that are going to be tested in the near future. Find trials recruiting near you, or find information about volunteering for these potentially life-saving therapies.
You can use the world’s largest social network of more than 1 billion users as a virtual meeting place for you and your network of friends across the world. Make a personal account, and use status updates to keep your family and friends updated on your progress. If you wish, you can connect with virtual cancer support groups without leaving the comfort of your own home.
You can also follow the Facebook page for The Mesothelioma Center. That page features stories from Asbestos.com, as well as content from other sites that we want to share with our followers.
The Huffington Post’s Healthy Living
This online news giant covers topics from politics to current events, but it also has a meaty section on healthy living where authors contribute articles about topics such as:
- Stress management
- Positive attitudes
With updates multiple times a day, the Healthy Living section provides plenty of material for your reading pleasure. If you own a smart phone, you can download the online publication’s free app for iPhone or Android devices so you can read on the go, like in the waiting room at your doctor’s office.
The Cancer Survivor’s Network
Offered by the American Cancer Society, these public forums are a brilliant way for mesothelioma survivors to connect with other patients and caregivers, on their own time. While patient-to-patient forums aren’t a substitute for professional emotional support, they’re an excellent way to feel less alone in the fight, and perhaps pick up a few treatment tips along the way.
Members can ask and answer questions, share their stories and offer encouragement at any time of the day or night. There are specific sub-boards for lung cancer, peritoneal cancer and rare cancers, so there’s certainly a wide range of opportunities to find an appropriate place to share.
Just remember that other survivors aren’t medical professionals, and that you should never adopt any of their health-related advice without first consulting your physician or oncologist.
How often do you find yourself searching for mesothelioma information online? What other websites would you add to this list?