My oldest daughter has a very rare non-hereditary genetic mutation that causes a condition known as McCune Albright Syndrome (MAS). It occurs in 1 of 1,000,000 people, meaning that there is less than 500 people in the United States with MAS.
MAS has a variety of symptoms including loss of vision (she is legally blind), tumors (benign or cancerous), fibrous dysplasia and more. In her case it has caused her to have a pituitary tumor. Many pituitary tumors are benign and pose no problem, but in her case, the tumor is secreting excess hormones, including growth hormones that caused her to grow an inch and half in height in her mid-thirties, along with excess weight.
Her first pituitary tumor was surgically removed, but it came back. As the second tumor grew, doctors in our area kept saying they couldn’t do anything about it because it was less than 10mm (0.4 inches) in size. Most of them told her that Obamacare dictates that the tumor be at least 10mm or larger for them to treat it otherwise they won’t be paid by insurance companies. Even though her tumor was too small to meet Obamacare standards, it was secreting excess hormones which caused her to develop Cushing’s disease, also known as Cushing’s syndrome.
According to the Mayo Clinic:
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“Cushing syndrome occurs when your body is exposed to high levels of the hormone cortisol for a long time. Cushing syndrome, sometimes called hypercortisolism…Too much cortisol can produce some of the hallmark signs of Cushing syndrome — a fatty hump between your shoulders, a rounded face, and pink or purple stretch marks on your skin. Cushing syndrome can also result in high blood pressure, bone loss and, on occasion, type 2 diabetes.”
Cushing’s also causes severe fatigue, muscle weakness, depression, anxiety, irritability, headaches, cognitive problems, bone loss and excess weight. If left uncontrolled, Cushing’s can be fatal as it eventually impacts the heart and other organs.
She finally found a doctor in Houston (she lives in northern Kentucky), that said he would treat her tumor because he does not work under Obamacare. He treated her with pinpoint radiation that was administered 5 days a week for 6 weeks. In time the tumor shrunk and stopped secreting and the Cushing’s went away.
Then the tumor started to grow again and secrete excess cortisol and guess what? The Cushing’s returned with a vengeance, but the tumor is smaller than 10 mm, so none of the doctors in our area would touch it. Returning to Houston for more radiation is not an option since it didn’t permanently stop the tumor from secreting hormones.
She has found an endocrinologist who will treat the Cushing’s. The doctor said there are 3 options, since radiation is not one – surgery to remove the tumor (which no one wants to do at this time) or two different medications. One of the medications is ruled out because it can affect the liver and her Cushing’s has caused her to have liver problems, leaving only the one medication. This medication is supposed to help counter the effects of the excess cortisol, however, it doesn’t stop the tumor from secreting the excess cortisol, so the problem will continue to occur.
On her last visit to the endocrinologist, our daughter was told that her Cushing’s could kill her in a couple of months to a few years if not controlled. Our daughter is only 42.
Surgeons and other doctors that could treat her tumor don’t seem to care that she has out-of-control Cushing’s that could kill her. All they are concerned with is that tumor is less than 10mm and fails to meet the minimum requirement for treatment under Obamacare.
When Obamacare first went into effect, I saw that it was designed to allow many people to die early, thus removing their cost burden from the system. I referred to Obamacare then as the healthcare for death and was rebuked by some for saying so. Today, I repeat that Obamacare IS the healthcare for death because it is doing its best to kill my daughter.
The opinions expressed by columnists are their own and do not necessarily represent the views of Barb Wire.