I have a very rare disease called Parry Romberg Disease. There are only about 500 diagnosed cases in the world. There is no known cause and no known cure.
For me, this disease started to show signs when I was about 7 or 8 years old. I was not diagnosed until the age of 18 when I found out part of what the disease does.
In laymen terms my head is eating itself. It is wasting away before my eyes and taking the left one with it. It was not until I was 34 that I found out how the disease ends. It was believed that the disease reached its own “burn out” phase, but research published in 1981 along with several personal testimonies have shown that 2/3 of Romberg cases continue atrophy into brain involvement.
This disease has spent 26 years wasting away my facial tissue including bone, muscle, fat and optic function. It will most likely end by taking my brain function leaving holes and lesions.
At times the pain is unbearable whether it be physical, mental or emotional. Suffering from something that the smartest men on the planet struggle to understand is a struggle. Suffering from societal judgement continuously along the way is absolute anguish. Seizures and other disorders walk hand in hand with Rombergs making relief impossible.
Cannabis and cannabis oil came into my life in the midst of attempting relief from this disease. I had tried many medications prior including methadone and extremely invasive procedures in order to reduce the pain as there is no stopping the trainwreck known as Rombergs.
Cannabis oil has not only helped manage my pain on all levels, it has allowed me to be an active participant in my family’s life. In my life. Oxycontin and other heavy, dangerous medications were on my horizon if not for Cannabis.
I will always have Parry Romberg Disease. But thanks to Cannabis oil, I have a chance at always having Katie also.