Have you ever heard of McCune Albright Syndrome (MAS)? Chances are you haven’t heard of it and the reason is, it’s a rare non-hereditary genetic mutation that occurs in only 1 in 1 million, which means that fewer than 500 people in American suffer from this affliction.
The mutation prevents the body from producing a certain protein. The symptoms of MAS can vary from person to person, but some of the more common symptoms are loss of vision, multiple tumors (benign or cancerous), fibrous dysplasia, wine spots on the skin and more.
Most cases of MAS today are diagnosed when the person is quite young, but 40 years ago, it was not well known and rarely diagnosed. My oldest daughter has MAS, but wasn’t diagnosed until she was in her 30’s. Today, she is legally blind, suffering from her second pituitary tumor, and has fibrous dysplasia in her face.
While many pituitary tumors are relatively harmless, hers is not, as it secretes excess growth hormones. She grew an inch and half in height in her mid-30s and has put on a lot of excess weight, which is all hormone produced.
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:
“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 want to 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 the 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.
Five-years-ago, when Obamacare officially went into effect, I received a lot of criticism because I referred to it as the healthcare for death system. Obamacare was designed to keep expensive medications out of the hands of people who need them to live. It was also designed to allow many seniors and people with chronic illnesses or other serious health conditions to die earlier than necessary. I feel that this is what is happening to my daughter. The rules of Obamacare do not take into consideration the actual health needs of people, but in fact, sets rules that prevents some lifesaving treatments, like treating a tumor that is smaller than 10mm. Yes, I believe that Obamacare is trying to kill my daughter to prevent her from being a burden to the healthcare system.