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Independent Living News & Policy from the National Council on Independent Living

Call For Stories: Voices of Pre-Existing Conditions

35th Anniversary Logo: NCIL – National Council on Independent Living. Celebrating 35 Years of Advocacy. Graphic features party candles.If you have a pre-existing condition or know someone who does, share your story and we will make certain the Senate hears it. You can either submit on Facebook at or submit privately by email at It does not have to be long, but personal stories make a difference.

Deadline for stories has been extended to Tuesday, May 30th.

Note: This project is separate from the #IAmAPreexistingCondition video project. Participate in one or both – all of our voices need to be heard!


  1. Rebecca says:

    Imagine a disease that is rare enough to be referred to as an “orphan disease” (meaning a condition that affects 1 in 100,000 people or less, so it is too rare for research grants that might find the cause and cure). Imagine that this disease can only be treated with medications that were not designed for the disease or a brain or spinal cord shunt, which carries with it a 50% fail rate and multiple “revision” brain surgeries throughout one’s lifetime. This disease is called Idiopathic Intracranial Hypertension (IIH). For reasons which are still unknown to physicians, IIH results from overproduction of cerebrospinal fluid which drastically increases fluid in the brain. The brain processes this as the presence of a brain tumor and mimics the symptoms, which can include spinal fluid leaks from the eyes, ears, and nose; unbearable pain; sudden or gradual blindness; diminished executive brain function; and a host of other symptoms. IIH is not a punishment for “something I must have done wrong” in the past. Debilitating illnesses and diseases aren’t somehow “deserved” by some but not others. It’s simply a rare disease. I’ve lived with it for 9 years so far, and as long as I keep up with my meds, I need very little else in terms of medical intervention. This disease took my sight, my ability to work, and cost us all of our savings, investments, our home, cars, and about 75% of our stuff – including having to sell my wedding rings to pay for $2800/mo in prescription meds. My disease may not be of any concern to US legislators, but as different as it may be now, I still have a life. I have a mother, brothers, a husband, children, and grandchildren who worry about me every single day. THEY matter. I beg you, please don’t permit yourselves to go down in history as the least compassionate legislature in US history. The United States of America is not a corporation in which dollars are the only definition of success; we are a nation of PEOPLE, blessed with unrivaled wealth and prosperity. When we come from scarcity, scarcity is what we have. When we come from love for one another and unshakable unity, we can look forward to centuries of continued blessings. My life is literally in your hands. I beg you to search your soul, and do the right thing without fear of recrimination. I beg you to do the jobs you were elected to do by listening to your constituents.

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