Dinesh Khanna, a professor at the University of Michigan has worked heavily with the rare disease scleroderma. Michigan has its own Scleroderma Program, of which Khanna is the director. Through his work, Khanna has become very familiar with the scleroderma resources available to patients online. Unfortunately, he has found that most of the accessible information is far too broad for any individual patient. If not too broad, it is often inaccurate.
Considering the fact that most patients do turn to the internet for answers, especially after they are first diagnosed with a condition, this misinformation can be incredibly harmful.
So, Khanna came up with a plan to ensure that scleroderma patients receive the information they need. He began collaborating with the Scleroderma Foundation, the University of New Mexico, as well as the Scleroderma Research Foundation to create his own accurate and interactive website. To aid in the completion of the project, the Patient-Centered Outcomes Research Institute provided the team funding.
The website is called Self-Manage Scleroderma.
Self-Manage Scleroderma has three main goals-
- Provide scleroderma patients detailed information about the condition
- Provide patients valuable information on how they can manage the symptoms associated with scleroderma
- Provide patients self-advocacy strategies that they are able to implement in their own lives
In order to ensure that patients receive the information they need, patients will complete a quick survey upon first entering the site. Then, they are able to navigate the site and find the specific information that they are searching for.
The website is available to all scleroderma patients, regardless of where in the world they may reside. This is incredibly important for patients who do not have support groups or a Scleroderma Foundation chapter in their area. This accessibility of the website’s virtual support is only possible due to the collaboration of the organizations listed above.
Khanna hopes that other medical professionals will recommend the website to their patients just like he does. He explains that the website can be especially beneficial for patients who are struggling emotionally to cope with the disease.
Self-Manage Scleroderma will be consistently updated by experts in the field so that the information is always up-to-date for patients.
This website is so valuable because all of the information it contains is scientifically accurate and all of it is available in one place for patients. Of course, Khanna hopes that over time it will grow and more patients will learn of this resource and be able to take advantage of all that it has to offer.
You can read more about Self-Manage Scleroderma here. You can also check out Michigan’s Peer Mentoring Program for Scleroderma.