9-25-18
Let’s start from the beginning before I get into the updates. As most of you may know by now that I am an odd duck. I have a rare disease named Multiple Hereditary Exostosss or Multiple Osteochondroma. It means I create bone tumors with cartilage caps along my long bones and in my joints. One on my spine has caused an even rarer form of seizures called Spinal Myoclonus. Those together cause chronic pain and fatigue. So when I’m not at work or the doctors, I’m at home in bed. Any tumor rapidly growing at this point has a higher rate of milagency.
Update on the disease and research. They have started a phase 1 clinical trial for growing children with MHE!!! That’s great for future generations if the trial works out. They will still have a 50% chance of passing it on, but the tumor growth should be limited. I’ll keep you updated as more info is known.
Update on my when it comes to MHE. Overall I’m a healthier person. I haven’t been “sick” with any colds or infections in over a year. I was told that my disease should be slowly down since I’m done growing, and it is slower than when I was a teenager, but I’m about to go in for my 33rd surgery. I honestly feel like I have the body of an 80 year old. My feet are constantly hurting (that should be fixed soon) but my back and hips are always aching. My jaw, which they removed the discs from 8 years ago has started popping and grinding every time I open my mouth. I’m on consertive treatment for that, which is wearing a night guard and being on a soft food/ liquid diet. Basically if it requires much chewing, I can’t eat it. I’m always tired, but I have Painsomnia which means I don’t sleep due to being in so much pain. Hopefully after this surgery, the constant pain will decrease.
