Tips by a Myelodysplastic Syndromes Patient on How to Navigate the Internet When Researching Your Rare Disease

Jane Biehl

Jane Biehl has worked as a professor, rehabilitation counselor, and a librarian. She holds three different degrees, and spreads her knowledge through freelance writing. She also has a myelodysplastic syndromes (MDS), a rare immune deficiency diagnosis, and is a cancer survivor.

Currently, she writes for CURE.

Inspired by the multitude of questions she receives from her readers, she decided to write an article addressing a major issue she has witnessed. Many of the questions she receives are frantic pleas for information, and requests to clarify information found on the internet.

Jane explains that the internet can be an invaluable resource. However, it can also spread falsified information that can lead to unnecessary fear and confusion.

When Jane was first diagnosed with her MDS she immediately turned to the internet. But she explains that the more that she read, the more she was confused. She didn’t feel more informed, she felt more and more helpless. She was reading completely different life expectancies, medications, and types of diagnosis for the same condition. Jane turned to her doctor. But unfortunately, her doctor would not answer her questions. So, she switched her doctor.

With a new doctor in hand and a greater understanding of her disease she says she

“Signed off because I wanted to stop reading and start living!”

Tips

These are the recommendations, advice, and words of wisdom that Jane offers.

  1. You will not face every potential symptom listed on your medication or read online. In fact, if most people did experience every severe side effect, most people who took the medication would not be alive. A medication must do more benefit than harm for the vast majority of people or it would never be approved as a therapeutic option in the first place.
  2. Patients who do experience negative side effects are much more likely to publish their experiences online than those who experienced no serious complications. The individuals who had a largely positive experience are likely off living their lives- too busy to be bothered to write a review online. Yes, side effects do exist and some people will experience them but, as Jane says, she would rather experience some of these side effects than not live.
  3. Every single patient is a unique individual who will respond to different therapies in different ways. For instance, Jane has a rare form of immune deficiency in addition to her MDS diagnosis which has made doctors apprehensive about prescribing her steroids. For other patients, this same prescription may be completely fine. But even with Jane’s diagnosis, she knows that if it were a life and death situation, she would still be given the medicine. She would simply be strictly monitored.
  4. Think about the source you are getting your information from. Jane explains that it is so important to talk to other patients, and how beneficial the support from them can be. She says that these fellow patients can provide valuable information on how to cope with the illness. However, for factual information, she suggests resources provided by research facilities such as the Cancer Center of America, Cleveland Clinic, Mayo Clinic, AICR, and MD Anderson, as well as other reputable sources.

Conclusion

In addition to considering the above tips, Jane also encourages patients to talk to their pharmacists when they have concerns about a medication. Pharmacists work with the medications patients take every single day and can offer valuable information.

Ultimately, there are a multitude of resources available to patients and you shouldn’t be afraid to utilize them. It is simply important to be aware of what resources you are relying on.

Jane says

“You are an individual and it is your body. Trust your own instincts.”

You can read more about Jane’s take on this issue here.


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