The Road Ahead: What to do After Getting Diagnosed With a Rare Disease

story from Family Features Editorial Syndicate, published on PR Newswire discussed how getting diagnosed with a chronic, rare disease can be an overwhelming time for a person. While the experience can also give a meaningful answer to mysterious symptoms, various factors such as affordability of available treatments can exacerbate the stress and confusion that many patients feel.

When you receive your diagnosis, it is best to tackle different problems one step at a time. Here was the

First off, do your best to have people that can support you in different ways. This can mean simply having someone to talk to, help with logistics, and help you with daily tasks when your rare disease gets in the way. Having a team of people that you know are listening and supportive can make the challenges ahead far less intimidating.

Secondly, you should do your best to understand the characteristics of your rare disease or condition. This can help you understand what symptoms you may expect, how your disease could progress in the future, and identify possible causes. Learning about your rare disease can be uncomfortable and intimidating, but staying informed as much as possible can make a real difference. There can be a lot to take in, so it may be a good idea to learn a little at a time.

While you are learning more about your rare diagnosis, part of what you will need to know are what options are available for treatment. Sometimes this is fairly cut and dry for rare diseases with limited options, but it is important to understand the benefits and downsides of each treatment so you can have an idea of which one will be most effective for you.

On the financial side, you definitely need to look into possible complications that can come up because of health insurance. While it is reasonable to expect that at least some of your costs will be covered, insurance companies can be unreliable and inconsistent when it comes to covering certain drugs. An example is step therapy, in which an insurer will only agree to cover the drug that the doctor has prescribed after the patient has tried and failed to see progress on “insurer-preferred” alternatives instead. It goes without saying that this can lead to worse health outcomes for you.

If you are required to undergo step therapy, work with your doctor to write an appeal. Your health may depend on it.


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