The story of Pamela
(Corrected spelling errors)
Hi, I’m Pamela. I’m an adult adoptee with a history. A history I didn’t know I had until I was 41 years old. I was born with a rare genetic disease, Incontinentia Pigmenti. This disease can take many paths depending on how severely you are affected. Many things are treatable, some could be prevented, there is no cure. Of course all of this is helpful if you know what you have. I DID NOT. I was diagnosed at birth and then adopted at 11 months of age. Along with the new baby, came a folder of information . My disease was in there, but my new parents chose to pass the folder along to the family doctor. I’m pretty sure he had no idea what IP was and back in late 1960, he couldn’t Google it. At any rate, I grew up with a multitude of physical issues that were unexplained.
IP begins as a blistery rash. It can leave scars and bald patches if you are lucky enough to have it on your scalp, check. It causes missing teeth, and misshapen teeth, check. Short stature and close set eyes, check. it can cause neurological issues, ocular issues and a host of other physical and mental problems. I have the occulat problems. Had I known, had someone read and followed my paperwork, it could have been preventable, treatable. In my case, the retina in my left eye detached at 15, I lost sight in the eye within a year and at age 18, I developed glaucoma and lost the eye entirely. I almost lost sight in my right eye as well, but I was blessed to find a Dr who questioned all of this and said that I needed to find my medical history.
I knew which adoption agency I had come through, so I contacted them. They provided me with all the same “non-identifiable” information my adopted parents had received 40 years ago. The diagnosis was there, I had genetic testing done for documented proof, and I keep a journal of all my medical issues so that my daughters will have a history. I am married, have 2 grown daughters and 4 awesome grand kids. I am a Tap Dance teacher/dance company director. My life is full and I urge anyone with a disease like this to never give up. If my genetic testing or this story can help one person, I’ll feel truly blessed! Thank you!