Your child is presenting with a set of odd symptoms, or features that are interfering with his or her activities of daily living. You visit your primary care physician who confirms that those symptoms suggest a disorder or disease but cannot pinpoint exactly which one.
Your child is referred to specialist after specialist who perform every diagnostic test known to mankind. You have high hopes that at least one of those specialists will finally give you some answers only to have your hopes dashed to pieces when they too come up with no definite diagnosis. Your child has now joined the ranks of those who have an undiagnosed disorder, disability, or illness. Many people living with medically unexplained disorders spend a majority of their time searching for answers and help.
Unlike the diagnosed, who have access to the proper medical protocol and therapies specific to their disabilities or diseases, the undiagnosed have no tried and true treatments to offer them hope of ever improving their conditions. Parents with undiagnosed children face tremendous worries and burdens. Their loved one may be suffering but unable to access proper healthcare because even if there does happen to be a treatment or therapy that might be of some help, without a specific diagnosis many insurance companies will not pay for such treatments or therapies. Parents are forced to watch their child’s condition deteriorate and worry that they may not get a diagnosis and treatment in time.
Another issue that some families with an undiagnosed loved one face is that many times the ill or disabled individual is accused of faking their symptoms and out of frustration diagnosed with a mental illness, thus dashing all hopes of ever being properly diagnosed or receiving the proper treatment. The undiagnosed are at another disadvantage also. Unlike well-known disabilities or diseases with several foundations or charitable organizations raising awareness and funds and looking out for their welfare, the undiagnosed have only a precious few looking out for their wellbeing. The time has come for the world to be made more aware of the devastating plight of individuals living with undiagnosed diseases, disorders, and disabilities.
Undiagnosed: Medical Refugees is a documentary telling the story of millions of people whose lives have been devastated by unknown and undiagnosed illnesses.
Swan USA: Syndromes Without a Name Swan UK: Syndromes Without a Name are organizations devoted to supporting and providing information and advice to families of children living with a syndrome without a name. In Need Of a Diagnosis Inc. advocates for increased accuracy and timeliness of diagnoses and is a resource center for those who suffer with illnesses that have eluded diagnosis. Please visit Undiagnosed for a list of organizations and foundations dedicated to assisting and supporting the undiagnosed.
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