AKU is known as “Black Bone Disease”: A VERY RARE PAINFUL DISEASE – with NO KNOWN CURE – ONLY POTENTIAL MANAGEMENT


If you view the utube video link at the end of this, what you will discover that this particular pain pt is dealing with a very rare painful disease. In the entire USA there could be upwards of 700 total pts dealing with these disease.  According to the video the only potential management for pts dealing with this disease – currently there is no cure for pts dealing with this disease – is LOW IMPACT EXERCISE/ACTIVITY. So if one of these pts have their pain management meds dramatically reduced… Typically they lose the ability to do  LOW IMPACT EXERCISE/ACTIVITY.  In this particular pain pt, they become – to use the pt’s own words – I am totally bedridden and need help to regain my quality of life.

I AM SUFFERING FROM THE FORCED TAPER THAT HAS BEEN CAUSING MY INCURABLE DEBILITATING BONE DISEASE TO SPREAD FURTHER DOWN MY SPINE = IT IS INHUMANE WHAT IS BEING DONE TO ME!!
    Imagine living with a rare genetic bone disease that has no cure and causes excruciating pain. Then imagine the medication that effectively alleviated that pain for 29 years is abruptly tapered and you are forced to take only half the dosage your body has become dependent on.
    Not only is the pain unbearable, but the resulting stress placed on the body prevents you from exercising or participating in physical therapy, which is vital to someone with Ochronosis/Alkaptonuria (AKU) to prevent chronic joint pain and inflammation.
    AKU is known as “Black Bone Disease” because it turns bones black and brittle. It is the oldest metabolic disease on earth and has even been found in female Egyptian mummies!
    After being diagnosed with AKU, I was placed on a very high dosage of morphine to stop my body from producing Homogentisic Acid (HGA). People like me born with AKU are missing an enzyme that prevents them from fully breaking down HGA. At high levels, HGA devours my bones, turning them black and stripping the cartilage and cushions between them.
    My former physician of 32 years identified morphine as a pain medication that helped without causing side effects. I was able to function again and live a decent life, in spite of having a debilitating disease.
    But in 2017, the CDC opioid guideline was adopted in Hawaii as state law, and my doctor was driven out of practice. I cannot find a doctor to replace him. They all see my need for morphine, but they do not want to risk their livelihoods by taking me on as a patient. I am being harmed by the state and no one will do anything to help me! Due to the morphine being reduced to half of my 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, along with my liver and kidneys.
    I have endured irreparable damage by being forced off my old dosage of medication in such an inhumane manner. Every doctor I have been referred to has refused to accept me as a patient once they look over my medical records and see I have a rare genetic bone disease that requires opioids.
    Only when I was forced on a lower dosage did AKU start to spread. I have had four failed surgeries on a non-operative disease, and no doctor wants to put their livelihood on the line to help keep this disease from hurting me more!
    I have never abused drugs or alcohol in any form. I have comprehensive medical records, including MRIs and x-rays documenting my illness and treatment history. It will also show that for 29 years on the original morphine dose, my liver stayed strong and clean, compared to a patient who has been on a toxic medicine like Suboxone that is just as addictive, as well as, being severely damaging to the liver and kidneys. I am being tortured for only taking what was prescribed to me. FIRST,DO NO HARM, I HAVE BEEN VERY BADLY HARMED BY THIS OPIOID CRISIS FORCED OFF A MEDICINE THAT GAVE ME QUALITY OF LIFE< TO NOW BEING BED RIDDEN BY BEING FORCED OFF IT WHEN IT HAD DONE NO HARM TO ME!
    Please help me obtain the help I need before this disease spreads even more than it has. I am totally bedridden and need help to regain my quality of life.
    I pray that a revision of CDC guideline will allow doctors to do their jobs again without being persecuted, and will give me back my life so that I can grow old with dignity. Legitimate pain patients who had never abused drugs are getting treated like addicts, demonized for taking prescribed medicines from licensed doctors.
    Please watch this video if you have any questions about my disease: https://www.youtube.com/watch?v=7PpQU3wrdlM&t=30s

 

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