My daughter is suffering from a variety of health conditions that includes her second pituitary tumor, major loss of vision in her left eye, swelling of her knees and ankles, fibrous dysplasia in her nose that is now affecting her right eye and Cushing’s disease.
After doing some research of everything put together, she fits the textbook criteria for a genetic disorder known as McCune-Albright syndrome.
“McCune-Albright syndrome is a disorder that affects the bones, skin, and several hormone-producing (endocrine) tissues.”
“People with McCune-Albright syndrome develop areas of abnormal scar-like (fibrous) tissue in their bones, a condition called polyostotic fibrous dysplasia. Polyostotic means the abnormal areas (lesions) may occur in many bones; often they are confined to one side of the body. Replacement of bone with fibrous tissue may lead to fractures, uneven growth, and deformity. When lesions occur in the bones of the skull and jaw it can result in uneven (asymmetric) growth of the face. Asymmetry may also occur in the long bones; uneven growth of leg bones may cause limping. Abnormal curvature of the spine (scoliosis) may also occur. Bone lesions may become cancerous, but this happens in fewer than 1 percent of people with McCune-Albright syndrome.”
She’s had the fibrous dysplasia for several years and it just suddenly started growing like crazy. She says it’s bothering her good eye and her breathing through her right nostril, so she and her husband started calling to get her some medical help and get her tested for McCune-Albright syndrome.
First they called her regular eye doctor who said they needed to see this other specialist who turned out to be an eyelid specialist. This doctor told them he couldn’t help and recommended that she see a neuro-ophthalmologist who in turn told them that she needs to see someone that specializes in fibrous dysplasia. None of these specialists would see her for what she needs nor would they order the test for McCune-Albright.
Feeling frustrated, her husband called the Mayo clinic. They told him that before Obamacare, she could walk into almost any hospital and request to be tested for McCune-Albright syndrome. However, once Obamacare took over, a patient cannot order tests for themselves, but the tests have to be ordered by the appropriate specialist, in her case a geneticist.
They called a highly recommended geneticist in the area and the earliest they can get in is a month from now. The problem is that the fibrous dysplasia around her right eye and nostril has been growing rapidly in the past couple of weeks and they fear that another month might cause damaged to her good eye, along with restricting her breathing through her right nostril.
In the course of trying to get her treatment, they are finding out that due to more Obamacare regulations that specialists are restricted to only treating patients that fit in with their specialty. If there are multiple conditions, they may end up having to see 2-3-4-5-6 different specialists. Each one will charge a fortune meaning the total cost of treatment will be 2-3-4-5-6 times more expensive than what it could have been before Obamacare.
By the time she runs the gamut of Obamacare red tape, she may lose part or all of the vision in her good eye and who know what else. I just looked at her eye and nose and not only is there noticeable growth but she is getting some purple bruising under her eye next to the nose. Obamacare doesn’t care about the patient. Obamacare is meant to run everyone through the same cattle chute and bleed them dry financially and they don’t care what happens to you physically in the process.
I’m sure that if Obama or Mrs. O suffered from the same conditions my daughter has and had to go through the same rat race of red tape, that there would be some major changes made to Obamacare. But, they never have to worry about their healthcare and they don’t give a darn about anyone else’s!