The story of Virginia
Imagine living with a rare genetic bone disease that has no cure, that causes excruciating and debilitating pain. Then imagine the prescribed pain medication that effectively alleviated that pain for 26 years is abruptly stopped. Not only is the pain unbearable, but the resulting stress placed on the body prevents an individual from being able to exercise or participate in physical therapy, which is vital to preventing accumulation of Homogentisic Acid (HGA), a toxic acid that can contribute to chronic joint pain and inflammation, in someone with Ochronosis/Alkaptonuria. After being diagnosed with Alkaptonuria (AKU), also known as “Black Bone Disease” as it causes bones to turn black and brittle, I was placed on a very high dosage 180mg of morphine to prohibit my body from producing HGA levels that devour my bones, turning them black and stripping the cartilage and cushions from in between them. AKU, a genetic disease, is caused by a missing enzyme which means a patient cannot fully break down HGA in their body have shown that AKU is the oldest metabolic disease on Earth, and found in Egyptian female mummies!
My former physician of 32 years eventually identified morphine as a pain medication that helped without causing a negative reaction to synthetic chemicals or harming my liver and kidneys. I was able to reduce monthly `Ohana chore services from 85 hours to 45 hours. In 2017, because the CDC Guidelines were adapted by my state as law, and my doctor was driven out of practice,I cannot find a doctor who will take me as a patient? They all see my need for the medicine I was forced off of, and do not want to risk their livelihoods by being my doctor.Meanwhile I am abandoned by a doctors and left with NO HELP – I am being HARMED by the state and No ONE will do anything to help me!! Due to my morphine dosage being reduced to half of the original dosage, the HGA accumulation has eaten two holes into my heart valves, resulting in a life-threatening heart condition. HGA has also spread to my upper cervical spine, my lower cervical spine, my heart and liver and kidneys.
According to the Centers for Disease Control and Management’s Rules and Regulations, patients must be tapered off of morphine safely. In 26 years of being compliant with a prescription of Morphine 180mg dosage, I have never suffered any side effects from this medication. I have endured irreparable damage by being forced off the dosage of medication, in such an inhumane manner.
Every doctor I have been referred to has refused to accept me as a patient. I have been abandoned by healthcare providers. I am scared and feel all alone. I need a caring doctor who will taper me off of the morphine without causing any more harm than has already been done to my body. I have comprehensive medical records, including MRIs and x-rays documenting my illness and treatment history. Please help me obtain the help I need before I become totally bedridden.
I need help to regain my quality of life, the decent life that I WAS LIVING without the pain of Alkaptonuria. I do not wish to go back to receiving 85 hours each month of chore services, a cost that is a bigger financial burden on SSDI. I only wish to retain as much independence as possible, as I age with this disease. I thank you for your time and consideration with this matter. . I pray that revision of CDC Guidelines and allowing doctors to do their jobs without being persecuted will give me back my life and I can grow old with dignity. Please watch this video if you have any questions about my disease : https://www.youtube.com/watch?v=7PpQU3wrdlM&t=30s
Sincerely,
Virginia