Wednesday, April 2, 2014

Being an Orphan... Disease, that is.

You learn something new every day.  

I read an article today about company working on new drugs for Polymyositis and Dermatomyositis patients.

You can read the article here.  

In this article I stopped after reading the following, "Both polymyositis and dermatomyositis have been designated as orphan diseases by the U.S. Food and Drug Administration (FDA)."  An orphan?  I'm an orphan?  No one wants to be an orphan, and the use of this word as an adjective for my disease doesn't give one a warm fuzzy feeling.  

I wish that I had a better resource to site, but regardless, The Wikipedia states that, "An orphan disease, is any disease that affects a small percentage of the population."  This is mostly due to the correlation of rare diseases and a the lack of treatment, resources and even the severity of the condition.  Awesome.  

No one wants to be an orphan.  When I browsed some definitions of the word, I came across this (  "A person or thing that is without protective affiliation, sponsorship, etc."  Now I understand why this term is giving me such a bad taste in my mouth.  No one wants to be alone.  No one wants a disease that changes their life forever.  No one wants said disease to be one with little to no awareness, treatment, funding, resources, research or options in general; the list goes on.

I know that I have said it before here and I'll gladly say it again.  One of the hardest parts about getting a diagnosis, any diagnosis, is that period before you learn that you're not alone.  This is why when someone tells me about a friend that just got diagnosed with <insert rare disease here>, one of the first things I say is to make sure that they find others that share their diagnosis.  It's often said that there is strength in numbers and this is true when staring a new diagnosis in the face.   

No matter how much your family and friends love you and support you and research what you are going through and listen and hug you, they still don't understand what it feels like to go through what you are experiencing with your diagnosis.  Now, this doesn't mean that others with your condition know exactly how you feel and you're the exact same person, no.  But they know the disease, and they know that feeling of just learning that you're an orphan.

It's my hope that in my lifetime, the Myositis family can drop the label of "Orphan".  I do not wish for more than 200,000 people in the US to experience this disease, but I am hopeful that we can have more research, more treatment options, more awareness.  Since the myositis diseases are rare, it's my guess that when awareness and education increase, so will the number of those diagnosed.  However I feel that more people diagnosed is better than more people suffering without a diagnosis.  So, if the numbers climb with awareness, I guess that is okay to me. 

Ben's Friends, (the online patient community that I belong to) recently got their 501c3 status approved.  This is exciting to me, as this will bring new opportunities to the site and awareness to the growing number of rare diseases represented.  Currently, nearly 40 types of rare diseases have a place to call home there; it's members can be supported and ditch that orphan feeling.  Increased awareness can also lead to increased funding and to more research.  These are all things to be very excited about.  It's just the beginning, but it's a very promising one!

Thanks for listening to today's deep thoughts from Maren.
If you liked this post, share the Ben's Friends site with your friends and family, or on your Facebook page.  You never know who may be quietly searching for someone who understands.  Acute Disseminated Encephalomyelitis (ADEM), Addison's Disease, Crohn's DiseaseErythromelalgiaGuillain-Barre Syndrome (GBS), Lupus, Lyme's Disease, Multiple MyelomaNephrotic SyndromeSjogren's Syndrome and many more.  They're all there! 

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