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We Need More Undiagnosed Diseases Programs

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Our medical system is in dire need of more undiagnosed diseases programs. There are endless patients tirelessly searching for a program or a doctor who has the desire, the time, and the funding to help. These are patients who have endured copious amounts of lab work and testing, traveled far from home in search of a diagnosis, and dealt with disabling diseases for a period of time. These patients deserve a program where their symptoms will be taken seriously, where doctors are trained in dealing with difficult-to-solve cases, and where they can make advancements in their search for a diagnosis.

It took me over a decade to find this type of program.

For 15 years, I have searched for a doctor who would read through my endless stack of lab work, who would analyze my abnormal lab values and how they may be intertwined. I traveled 1100 miles– twice — to a facility that claims to be the leader in diagnostics, and each time left without a real answer.  I was rejected from the National Institute of Health’s program as they claimed there was nothing more they could do.

Let me make this clear: I am the patient who searched fiercely for someone to help me. I have a rare or unknown disease that is a challenge to diagnose, and I won’t give up as I’m determined to fully live my life.

Through connections made with other undiagnosed patients, I did finally find an undiagnosed diseases program that wanted to help. It took so much energy to find them, that when I finally did, I wondered why a doctor would be so interested in helping me.

I’d already been told that I may never receive an answer. I’d already endured 15 grueling years of bouncing aimlessly from specialist to specialist.

But, should it take that long?

Should we endure so much torture before someone is willing to help us?

Must we spend so much money on traveling to out-of-network facilities before we find our hidden gem?

The answer is no.

We deserve better.  We need more.

We are human beings in desperate need of medical attention.

And so I ask you to share this article. Let the world know about our undiagnosed community and all we have endured. Tell your local government officials that more funding must be awarded to programs that want to facilitate the diagnosis of rare diseases.

This community is full of ordinary people in the most unordinary situations — but it could happen to you.  And if it does, you’ll want to know there is a medical community ready to help. You’ll want to see that searching for a doctor to help doesn’t lead to a dead end. You’ll be thankful to hear that there are spectacular programs committed to diagnosing and treating rare diseases, like the one that I was so fortunate to find.

So help me spread the word. There are 25 million people waiting to be diagnosed in America alone. Let’s make the world aware, so when you, or your mother, uncle, sister, or child find themselves in this situation, there are doctors waiting to support you through this challenging time.

Originally published: December 6, 2019
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