Why I'm Stepping Out of My Comfort Zone and Into My Congressman's Office for Rare Disease


Rare disease has changed my life in many ways, but the most unexpected recent change has been my interest in laws and political issues regarding health care and treatment options. You see, I am a right brainer. I enjoy and flourish in the arts. I’ve never jumped for joy while taking a math or science class. I can recall looking up medical terminology after diagnoses and subsequent MRI or test reports years ago, and how strange it was for me to learn about medicine. I was in a new arena and out of my comfort zone.

However, I realized that in order to advocate for my care, it was a necessary step, and I was finding it interesting! I was being forced to expand in ways I had never imagined. Being creative had always been my focus whether in study, or for fun. But more recently, as a patient and advocate, I’ve experienced another surprising shift in interests. Why, you ask?  Because for the past 6+ years, I’ve been relentlessly and urgently seeking treatments as a patient for Klippel-Feil syndrome, cervical dystonia, Ehlers-Danlos syndrome, and vasculitis – all rare diseases. Time and time again, I have found little understanding or relief. I’ve traveled to five states seeking care. Yes, there are a few great doctors out there. Great doctors who have limited time, limited accurate information, and limited treatment and medication options to offer me as a patient dealing with such an odd laundry list of rare conditions.

I’ve been at a personal stand-still regarding my care for well over a year. After putting down the paint brushes to focus on MRI reports and the like, I have come to a dead end regarding what might help the chronic, debilitating pain and muscle spasms that send a constant 911 signal throughout my body.

I know I am not alone in this.

Care options for those with rare conditions are extremely limited.

Complaining about it and doing nothing will get us nowhere. However, for myself and others in the rare disease community and beyond, there is something we can do to help ourselves!

You see, there is a bill, the 21st Century Cures Act H.R. 6,  that is critical for the improvement of care for Americans as a whole, but namely for rare disease patients who are desperately in need of this. In July 2015, the bill passed the House. This fall, when summer recess ends, we need the Senate to pass this bill for it to move forward. This bill needs to be implemented and we are running out of time!

I’ve been preparing to meet with my legislators personally, to urge them to help pass this bill now. Gulp. I’m completely out of my comfort zone!

The idea of walking into a government office makes me so nervous, but so does a future without proper health care for the conditions I face daily.

I’ve literally had to brush up on how a bill becomes a law, think “I’m Just a Bill” style! Just like I had with every unknown medical term on MRI reports, I’ve looked up some unknown government and political terms, to understand the process. After learning more about this bill, which includes the Open Act  and funding for the NIH and FDA, we can’t let this valuable path to cures pass us by. Dare I say, I am passionate about the importance of supporting this bill, right now!

The 21st Century Cures Act will expand treatment options for all of us, not just those who have a rare disease. I am asking you to please join myself and others. Send your senators and representatives an email. Hop on Twitter and tweet to Congress using hashtags like #CuresNow and #OPENact and #Path2Cures! Not sure who your federal representatives are? Click here.

Speak up, call, write, or set up a meeting, because it really is up to us, and we cannot afford to wait. There are even talking points to help. Start somewhere. Be bold. If we don’t tell Congress what we need and ask for their support, we can’t expect them to realize there is a need, much less do anything to change it.

Of the 7,000 rare diseases that affect 30 million Americans, only 5 percent of rare diseases have an FDA approved treatment. The 21st Century Cures Act has been developed to help us, but it needs our support now. If I can, you can! Not to mention, new treatment options would allow me to feel well enough to get back to other passions. Together we are powerful. Please join me.

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