If you had a previous pregnancy affected by hemolytic disease of the fetus and newborn (HDFN), you are more likely to experience it again in a subsequent pregnancy.
However, this doesn’t mean you should be overwhelmed with worry about the future. Research and medical advancements are constantly changing, and there are more resources and information available for rare diseases like HDFN than ever before.
Being diagnosed with a rare and potentially severe pregnancy-related illness can be a stressful experience, but staying informed about current research can help relieve some of that anxiety and bring back a sense of control. Here are some ways to find medical research and studies on HDFN.
Academic search engines
If you are well-versed with academic writing, then the use of academic search engines such as PubMed and Google Scholar may be of tremendous use. Be sure to check the date of publication to ensure that you are getting the very latest information as it relates to HDFN.
It is important to note that some studies discuss experimental therapies that are either still under investigation or are relatively new, meaning that data for their long-term use are relatively scarce. In other words, the therapies that are discussed in academic circles may not be readily available, and even if they are, doctors may choose not to prescribe them if there is too much that is unknown about the long-term efficacy and safety of these therapies.
If you find the journals and studies you’re reading to be a little overwhelming, there are places–like HDFN Companion–that you can find articles made specifically for patients and their families that help decode the medical jargon and explain the findings in more plain language.
Visiting patient-centered websites
There are many patient-centered health information websites online that break down complex scientific subjects into points that are easily digestible. These websites thus help some patients gain a footing into understanding specific diseases and how they are treated.
Read more about HDFN overview
However, it is important to note that some healthcare information websites are sponsored by certain drug companies, meaning that there may be an element of bias in the reporting. In addition, not everything you read online is accurate. Generally, every health claim must be backed up by a scientific source, either via a link to a study, or included in the “References” section of the article.
Unverified health claims online can be flat-out wrong and potentially cause harm if their advice is followed through. Be sure to practice vigilance when visiting healthcare information websites, and always look to see if health claims are backed up by verified studies.
Consulting your doctor
One of the best ways to gain more information regarding medical research and studies on HDFN is by talking to your OB-GYN. An OB-GYN is typically the person best placed to point you to the right medical resources.
This may come in the form of educational pamphlets and brochures, as well as disease information sheets. Consulting with your doctor also allows you to ask questions in real-time to avoid confusion later on.
While a diagnosis of HDFN can be scary, if you attend your follow-up meetings and comply with treatment, there is generally a favorable chance for a safe birth, and complications can be avoided with early diagnosis and treatment.
To gain more insights into what the research world is doing to expand our horizons on HDFN, medical papers published in reputable journals are a good place to start. However, your doctor should still remain your primary source of information for all things related to your treatment and potential side effects.
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