What is the problem?
Diffuse Idiopathic Skeletal Hyperostosis (DISH) affects well over 10 percent of the aging population, creating enormous cost and suffering.
Yet, there is little knowledge about what causes it or how to prevent or
treat it. Neither is there any systematic way in which patients, physicians, or researchers
can learn from each other's experiences.
There are Facebook sites, such as https://www.facebook.com/groups/DISHSUPPORT/ and
https://www.facebook.com/groups/DISHRESEARCH/ which are great for
communication and emotional support. The drawback is that Facebook content is always changing,
the same questions are asked over and over, and there may or may not be an informed response on a given day.
There also is no anonymity, everything posted is out there with names attached for the world to see.
This site is intended to be complementary to Facebook, but differ by being anonymous, structured, and highly analyzable.
What is the dream?
Envision a large number of fellow DISH patients pooling information about what we
experience during the course of the disease and about the effects of various treatments
and ways of relieving symptoms. Further imagine that the information can be easily retrieved and
used to identify patterns and levels of effectiveness of treatments and therapies.
That could not only
benefit fellow patients, but could potentially help physicians and give a head start to
innovative research and development.
What is being collected?
Risk factors, personal background and history
DISH manifestions with descriptions, history and radiological images
Treatments and therapies, treatment results, and treatment side effects
Monthly records on pain and interference with basic functioning
Life after DISH -- Things patients were able to do despite DISH
To see exactly what is collected and how it is displayed, select All Patients
on the menu, then click Select next to one of the patients in the grid and scroll
down the screen.
How can I participate?
To participate, click on Register above to create a login (if you are using a mobile device, click on your menu icon). Then, after logging in,
click on My Info to add/update information about yourself and your experience with DISH. Then learn from the
experiences of others by clicking on All Patients. At your
option, you can choose to get periodic e-mail reminders to update your experience with treatments
and your pain level.
Your anonymity is carefully guarded. The only identifying information that is collected,
your e-mail address, is never displayed to other users and will NOT be made available to
any other parties. It is encrypted, stored in a database on a secure server,
and is only used to communicate with you in regard to the project.
The intent is for this website to evolve based on the needs and requests of users, so please add your
comments and suggestions on the Suggestions page.