Comments

1. Gem615 says:

   March 26, 2010 at 11:11 am

   People need to realize that children grow up into adults. Those of us who haven’t met our ultimate fate early in life, are faced with unnecessary pain & suffering (and other disabling issues) for the rest of our lives, that I have found – virtually no one cares about. . . often by the vast majority of the medical community and especially, the Government.

   Now someone needs to tackle the issue of Medicare DESCRIMINATION against people with rare diseases. Don’t know who else or how many other people face the challenges of getting the treatment they need (at least for the symptoms/ manifestations of incurable, untreatable rare diseases), but I can attest to the fact that if treatments isn’t on their ‘list’ for what are otherwise ‘commonly occuring diseases in the general public’ – you’re pretty much out of luck & are forced (by the very hand that is supposed to help you) to continue to unnecessarily suffer whatever known/ unknown fate that inevitably results from the denial of treatment.

   I personally have had my condition(s) severely degredate even further, to the point where I am now bedridden 95% of the time (certain times of the year, it is 99.9%) b/c Medicare will not either pay my only doctor fairly (pain management is the only option I have left now), including their out right denial to pay for treatments needed to maintain ANY quality of life.

   I was born w/ a rare disease & have suffered a lifetime – yet made every attempt to live a ‘normal’ life. At the age of 40, I am now permanently disabled from not only my disease (Ehlers Danlos Syndrome), but have developed very advanced degenerative spine disease as my primary conditions. There are absolutely NO medical professionals in this Country that are willing to treat me, or even accept me as a patient b/c I am not ‘cost-efficent’. The neglect of not only the medical community, but Medicare has resulted in not only my inability to ever just ‘sit’ again (nevermind ever being able to independantly ambulate), but have such permanent & extensive nerve damage that I am now completely incontinent, bedridden & in extreme, non-releting chronic pain despite Rx (that often are overall, useless), loss of feeling use of limbs, dysfunction of my autonomic system (cannot regulate heart rate, body temp, often breathing – e.g. diaphram muscles, etc.). I am going on year 5, and whether I have only another 5 yrs to live or 10, 15, maybe even 20 . . . I can only watch as my body further deteriorates every single day (w/ chronic deterioration of collagen/ connective tissues – muscles,joints, organs, arteries, etc.) & there is nothing I can do about it b/c no one will even at least ‘try’ to help.

   People need to open up their eyes to the truth of what happens to many of us as we age (if we are that unlucky), and the realities of how horribly we are treated – by the ONLY people in this world we have to turn to. Instead, we are turned away, swept under the rug and ignored as if we do not exist, or are continually passed along like a hot potato b/c nobody wants to deal with it . . . but that is exactly what we are forced to do every minute of every day, while these people (medical & Government) just go home at the end of the day & continue to live their normal lives as if nothing ever happened. Out of sight is out of mind, when it comes to many of us. We are too difficult & too time consuming to deal with – and especially if there is no known cure or treatment, many have the philosophy of “Why bother?”.

   What needs to change firstly, is the train of thought that is burned into the minds of so many medical students in this Country. Most of us know their all too well known phrase “If you hear hoof beats, think of horses – NOT zebras”. Well, we zebras do indeed exist and we certainly deserve just as much of a chance & all the opportunities that the rest of the ‘general public’ have. Just b/c we are ill, have rare diseases/ chronic medical conditions – we pay taxes just like everyone else & have the same right to the same civil liberties. We are never going to go away, unless someone is willing to step up to the plate & actually do something about it.

   It is sickening. It is unjust. It is just plain, wrong.