When your child has a rare disease, finding information can be one of the most frustrating aspects of the same process. Up until this point you may have assumed that doctors have all of the knowledge and that you should simply do what they day. Or maybe you were more skeptical. Whatever your position was before the diagnosis, it is likely that you have discovered that your doctor does not have all of the answers. In fact, when it comes to your particular disease it may seem that your doctor has none of the answers.
This is why you must be a diligent researcher of your own child’s disease. We all have different levels of comfort with research articles and jargon, but here is the first step that I take.
Scholar Google. This is an amazing website that only searches peer reviewed journals, meaning it generally only includes articles that have some level of review before they are published. It does not mean that the findings are ‘right’ because there is really no way to ensure that the conclusions made by he author are the ‘correct’ conclusions.
You can put in your search term and confine your search to the last three or so years to get the most recent articles. Unless you are affiliated with a University or research institution you probably won’t be able to access the full journal articles, but you will be able to read the abstracts. This informs you in a few important ways:
- The abstracts don’t tell the whole story but they can give you a source of information that you can use to generate a list of questions that you can bring to your doctors.
- You can do some research about the authors of the papers. Sometimes the authors are researchers and would not make a good physician for your child. But in other cases the author is an excellent physician who sees patients and could be a potential source of a second (or third… or tenth) opinion.
- Google scholar lets you see all of the articles that have cited your article of interest. So once you have found an article of interest, Google Scholar allows you to easily see related articles.
What are some of the ways you have been successful in finding information about a rare disease?
Please check back for updates and contact me with any suggestions!
nora
