It’s hard not to want to do your own research after learning you have a health condition like IgA Nephropathy. And while you should feel empowered to do your own research, it’s also important to make sure the information you find is from credible sources (our website, among them!). Otherwise, you can wind up feeling, even more, overwhelmed and misled.
Here are some tips to keep in mind as you try to learn more about your condition and how it might impact your life.
There are now thousands of medical websites. Some provide reliable, up-to-date health information. Some do not. If what you’re reading is from a blog, a web page with no sources credited, or something similar, it’s best to do some more digging to make sure the information is accurate and not just one person’s opinion.
One helpful trick is to use search terms that include reputable sources too. For example, “CDC and COVID symptoms,” or “AAFP and chronic kidney disease,” or “MedlinePlus and dialysis.” CDC, AAFP, and Medline Plus are known to have up-to-date information that has been vetted by clinicians. As well, MedlinePlus.gov is a website of the NIH’s National Library of Medicine; it will often generate a list of information and links to other trusted sources too, so it’s often a good place to start.
An important clue to knowing the source of the information is to look at how the Web address ends.
For example, how many patients were included? Were they a certain age or did they need to have a certain level of protein in the urine or stage of kidney disease to take part? While the initial results of some studies are exciting (with good reason), it’s important to keep them in perspective.
Read information from a few sources that seem trustworthy. Share any information you find online with your providers. They can help put the information into context and let you know if it’s accurate. Also, remember that what is right for one patient may not be for another.
Hearing first-hand accounts of what it’s like to live with IgA Nephropathy or about certain treatments or side effects can help put health care choices in perspective and help answer questions only someone with IgA Nephropathy might know. It will also help you in gathering questions to ask your providers. Still, it’s important to keep in mind, that everyone’s disease course and response to treatment is different.
Be critical of information shared on social media platforms, such as Facebook groups or other online communities where people connect with others. While some of this information may be true and can serve as a lifeline to others with IgA Nephropathy, some of it may not be. Even though a person sounds knowledgeable, it does not necessarily mean it’s true or scientifically accurate. Always be wary of any treatment that claims to be a cure-all.
The best source of medical information that is tailored specifically to your condition and your needs should be your care team. If you don’t feel as though your doctor has enough experience treating IgA Nephropathy or if you don’t feel listened to, it’s always OK to get a second opinion.