Patient Stories

This was written in response to the HypoPARA Association asking for experience stories to bring to the FDA so that more funding for research and treatment development can come about.

The daily regimen of medications I take is not working. A drug that has the potential to improve my quality of life and functioning is worth approval, as is expediting the return of NatPara to the market. Anyone who disagrees does not have or does not understand the disorder.

I just graphed the levels based on pre-surgical and post-surgical tests since 2009 which show pre-surgical functioning levels of PTH and corresponding Calcium, which plummeted the day of surgery. On average my serum level has ranged on average between 7.2-7.6mg/dL, over 11 years.  This is unacceptable. Chronic hypocalcemia is unacceptable. Expecting someone to live in this manner, dealing with the acute and long-term effects is unacceptable.

I function enough to take my meds and manage my family. I am tired and it's very difficult to know that there is the potential of a drug that could improve things, yet it could be blocked by people who do not know how difficult it is to function. We deserve the opportunity to see if it helps and to get some semblance of normalcy in our lives. As indicated by the American Bar Association, in their statement on the treatment of prisoners, "Correctional authorities should respect the human rights and dignity of prisoners. No prisoner should be subjected to cruel, inhuman, or degrading treatment or conditions." It goes on to address health conditions indicating that, “restricting access to medication or medical devices or other health care" is a violation of those very rights. That said, we are left in situations that are cruel and degrading, yet our incarceration is a result of our malfunctioning bodies, not because of our actions. This is unacceptable.

Hospitals are covered with signs about "Patient Rights", "Autonomy and Sovereignty", "Dignity and Respect" and our right to "Speak Up". We are not malingering. It is not psychosomatic. We are not suffering from a somatization disorder. The implication that we are is belittling to us as patients and to the very physicians who thinks so obtusely. We have detailed histories to support the actual disease, with labs and numbers. It's not a history of unsubstantiated "symptoms". We do not have conversion disorders or factitious disorders. We plead, "check the labs." I can assure you that being a patient with this disorder is horrific. If I had to choose a disorder, this would not be it. This does not help us obtain attention.

There are many ways in which people have acquired this disorder. Mine was surgically induced. Proven fact. However, while providing details of how we got into this situation, we are not, as it would seem, being our own advocates. Rather, we are reinforcing the misconception that this is factitious. Proven fact. This needs to be addressed now, for we cannot continue to fight this disorder, maintain our lives and fight a medical community that seems vehemently opposed to understanding an "orphan disorder". We need our lives back!