Female

39

I am a 36 year old female with Camurati Engleman's Disease. I grew up on a farm on the Canadian prairies, with my parents and one younger sister. I was diagnosed with the disease at age four, after my parents noticed that I wasn't as physically active as other kids my age. I also had trouble sleeping and screamed in my sleep every night. I was put on steroids a few times throughout my childhood, but they were only short term aids.

After highschool, I managed to go to University for 4 years to obtain my Bachelor's of Education, and then moved back to the farm, and did substitute teaching in thte surrounding schools. During that time, I had to have a peritoneal lumbar shunt installed due to increased intercranial pressure. The shunt blocked a year and a half later, and I then had a bitempral lobe decompression surgery where two large circles of bone were removed from the sides of my skull to allow proper circulation and brain expansion. A few years after that I had a laminectomy on two vertebrae because increased bone growth was causing my spine to be squeezed.

I am always in pain. Sometimes it's better than other times, but usually continuous. I have had 4 seizures after the skull surgery, but I've since stop taking my seizure meds because I haven't had a seizure in seven years. I am married to a wonderful man, who is also an ambulance attendant! Help is always near! He also helps me get throught each day with a smile. I try to be as positive as I can, and stay as physical as I can. I have very little muscle mass, but I still try to lift light weights to keep strong. I drive a mobility scooter around town, and use a cane to walk short distances. I also wear a back brace when I am active. We don't have any children, which was a hard decision for us to make. With the amount of pain I am in, we didn't want to pass that on to a child and watch them suffer like I do.

I am on pain killers, such as a small amount of morphine, as well as Tylenol #3 that has codeine in it. I also have to take fluid pills to keep my brain fluid circulating, as well as high blood pressure pills. I am on a high dose of Vitamin D and calcium, which also seems to help the pain.