According to an article from Rare Disease Report, a brand new app has been created for sarcoidosis patients.
Created by Misha Rosenbach, the app was developed in partnership with the Foundation for Sarcoidosis Research. It’s available for download from iTunes.
So, what is sarcoidosis?
It’s a rare inflammatory disease. Those affected develop granulomas, bunches of inflammatory cells, in various organs. The majority of people diagnosed develop granulomas in the lungs. A smaller percentage develop the granulomas in the skin. Other affected organs might include the eyes, heart, or brain.
Symptoms of sarcoidosis depend on which organs are affected. Most commonly, people experience lung problems, such as a dry and chronic cough. When the skin is affected, symptoms might include pinkish-purple, scaly bumps on one’s face.
Back to the app…
Its main purpose is providing people with the best education about the disease since, sometimes, internet searches can lead to wrong information.
Additionally, the app will work through a phone’s GPS to direct patients to doctors in the area with expertise, or familiarity, in sarcoidosis.
The app is also a resource for local information and support groups.
The hope is that the app will eventually be used in sarcoidosis research by collecting data, such as what triggers sarcoidosis flares and how long the flares last. The first step in this process is giving anyone diagnosed the option to participate in surveys within the app to check trends on how the disease progresses and impacts patients.
App users will be able to see their disease trends over time in an easy-to-view format. Researchers can view the data as well. But, no personally identifiable information will be allowed, so the app is HIPAA compliant.
If 1,000 app users use the app daily, hopefully, that many questions will be answered without a huge cost. The overall goal is to have a better understanding of sarcoidosis and how it impacts patients over time.
With current technology and invention of new apps, more and more people with rare diseases will be able to connect with each other and gain up-to-date information on their condition. There is hope found in technology!
