Once you have been diagnosed with a condition such as kidney disease, no doubt you will turn to the internet to find information on symptoms, treatments, and other alternatives. However, be weary. The information you find may not be from reliable sources. Some sites can be filled with scams and outlandish claims of miracle results. You will need to do your due diligence before trying any sort of treatment, herb, or supplement suggested to you. This makes your method of research an important part of understanding your kidney disease. Read on for tips on how to properly research kidney disease.
Verify the Source
As general practice, try to find valid sites that will include articles that have been peer reviewed. For example: If an article is written by a doctor, other doctors would have reviewed that article for validity. These sites should also be from well known or established organizations, schools, medical institutions, etc.
Steer clear from any sites that have the following:
- Anonymous Authors
- Bad Grammar or Broken English
- The look of the site isn’t professionally designed
- The site barely gives any information, but tries to sell you something
- Does not provide any sources for the information given
- Has an obvious bias. Ex. A favorable study result provided a party that will benefit from the result
Blogs and Personal Websites
You are bound to run across many websites and blogs that will offer information from a personal perspective. In fact, if you are reading this article you have stumbled upon such a website. These sites can be a great source of information, but it is important to remember that every person is unique and the person’s experience may not coincide with your own. So take all advice with a grain of salt. A large part of your kidney journey will be discovering your path, learning your body, and what works specifically for you. We can definitely learn from one another, but we must also consider our unique needs.
Learn the Lingo
A large barrier to reading a lot of these articles will be the vocabulary. Some articles will be written for doctors and not the average person. Reading them may seem like reading a foreign language. This will get better with time, but it will require some effort on your part to learn medical terms and phrases.
If your are using Google Chrome as the browser, you can simply highlight and right click a word to look up the definition. There are also dictionaries online such as Medicinenet.com and the medical dictionary from Merriam-Webster available to help as you research.
Keep Digital Notes
You will definitely need some sort of online storage to keep track of your notes and findings as you research. Fortunately, that is easy to do with services such as Google Drive or One Drive from Microsoft. They offer free cloud storage when you sign up for an email account. Cloud storage is great, as you can access your files from any device with an internet connection. You can easily save your notes and share them with your doctor during your office visit. At the visit you can also write you doctor’s responses to your questions real-time before you can forget them. It will provide one central place to keep your notes where you can refer to them anytime. There are plenty of other apps out there, so choose the best one that you will be consistent with.
You can also create a bookmark folder in your browser to save links to articles or studies as you find them.
The idea is to keep all of your research together in a place that is easily accessible.
Social Media and YouTube
Social media will be a great resource for finding information about kidney disease. Not only that, but you can connect to people and organizations in your kidney niche. Maybe you want to research kidney cancer, or FSGS (Focal Segmental glomerulosclerosis), odds are you can find a group that speaks to your specific condition. There are numerous platforms and networks to choose from. I would encourage you to join a few and discover your tribe. Just remember that these groups are not filled with medical professionals, and while they can give good advice, it may not be advice that will apply to you. Even if there are some doctors in the group, they are not your doctor. Be wise when it comes to your health, and do your homework before blindly following any advice you see online.
There is also a wealth of information on YouTube that will help you in your kidney research. YouTube will allow you to save videos to your personal playlists where you can go back and reference them. There are several schools and medical organizations that post lectures on YouTube for the public to see. If you search for the kidney condition of your choice you are sure to find something valuable.
The Good Old Fashioned Library
I am not sure if anyone remembers the library anymore, but they do still exist. Even if you can’t physically go there you can sign up for an electronic membership at most local branches. It is actually mind boggling the amount of digital resources you have access to though your local library. I would encourage you to check it out as you research kidney disease. You can also check out books through apps such as Hoopla and Libby with your library membership. It is simple, free, and you don’t even need to know the Dewey Decimal System.
Researching kidney disease will take continual effort. Properly researching any subject is an acquired skill. It can be intimidating in the beginning. There will be terms and concepts that will be completely foreign to you, but you will become accustomed to them eventually. Just be consistent and patient with yourself.
For links and information to help start your research, please be sure to visit the resources page of the Kidney Disease Unfiltered website.
Happy Researching!!!
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