When it comes to getting a rare disease diagnosis, not one person will ever tell it you it was a walk in the park. As Kathryn (a gold level patient worthy contributor) can attest to, the path to diagnosis is anything but easy.

One day you’re walking down the road without a problem, the next you’re skin is covered in hives for no apparent reason and BAM, it hits you, the realization that you have no idea what’s going on and that you may not be getting the treatments you need.

You start explaining your symptoms to your friends, co-workers, family, and suddenly everyone’s a which doctor and proceed to tell you, “drink some tea, relax, it’ll probably go away soon. Get some bath salts and relax I’m sure it’s nothing. If it persists for more than a week then maybe you should go to the CVS MinuteClinic“. You insist it’s serious but they just tell you it’s all in your head and you’re probably just thinking it’s worse than it is. Meanwhile you’re sitting there all like…

Fast-forward a few years and things have only gotten worse, no doctor can pinpoint what’s going on and you’ve become more of an expert on your symptoms and how to manage them that anyone else. Until finally one day a doctor who knows a thing or two finally gets the right diagnosis and it’s like a dream come true! You know finally what’s wrong, you have treatment options available and you’re on your way to a better quality life. But wait, the medication costs how much? and my insurance is only going to cover half of it? and the wait, you’re telling me that hospitals and nurses have a habit of wasting drugs because the pharmaceutical companies make vials too large for the actual dosage I need. Welcome to the rare disease life, where pharmaceutical companies have the life saving drug you need but will bleed your bank account dry in order for your to get it.

Of course, it’s not always as bleak as I’m making it out to be. More often than not people get the treatment they need either through their insurance, through pharmaceutical co-pay assistance programs, patient registry research institutions that match patients with medical researchers or patient advocacy groups who specialize in helping patients get that precious treatment.

So for those of you who know someone going through the hard stage of being undiagnosed please, there is no such thing as one and done, there is no such thing as, take a tea and you’ll feel better. We love you, but you gotta stop. If you really want to help, then check out this link and help your buddy cope with being undiagnosed until she or he find a doctor that actually did their homework in med school and will provide them with the right diagnosis.

To the companies out there trying to make patient’s lives more difficult by putting more hoops for them to jump through, to the politicians who are refusing to help people get the coverage they need while using their hard earned money to advance your own agenda… please refer to the following:

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