A few Facts

I am always somewhat surprised when such a rare desease as porphyria gets spotlight in the media. Some of it is positive, some like some stuff with CSI miami, is very, negative and basically full of ignorance. But there is a radio programme which is highlighting the desease soon, as they have done once or twice before I think. They are as likely as the health professionals who still get stuff wrong about this desease simply because so little is known about it. Rare deseases do not get money spent on them, in research very much, as the big money gets spent on things that can be mass marketed. Yet, I have porphyria, and have to live with the consequences of many ignornat medical opinions over a time that has lasted decades. They were happy to label me as someone who had seizures and "mental illness" and the drugs taken over very many years can have only made the condition I am in now, more marked. And simply because this is such a rare desease, and I am the owner of this blog, I am going to copy and paste a little from the website connected with the radio broadcast.

Health Care Warriors
This Tuesday evening, February 8th, 2005 on Highway2Health-The Vickie Travis Hour/Health Care Warriors, we welcome Mrs. Diana-Deets-O'Reilly -http://members.tripod.com/~PorphBook/8.html who will be speaking on Porphyria which is not a mental disease any more than the flu or diabetes is but rather is a disease that destroys the liver. Electrolyte imbalance is the cause of any mental or cognitive manifestations. Sugar is the emergency treatment.

We are going to learn about Electrolyte Testing and the AIP Enzyme Replacement Study that can be life saving for these patients. We will hear about the cholesterol problems and resultant heart problems that porphyrics daily have to deal with and the other complications that go along with the condition. We will also be learning about the co-existing medical diseases that arise from the manifestation of this disease, one of which is cancer of the liver. We will learn why sugar or glucose is the mainstay medical treatment used for this disease and why diabetes goes hand in hand with porphyria. Some HMO systems treat medically proven porphyrics as if they were second class citizens and in an inhumane manner because of a limitation in professional educational standards often mislabel these people as drug seekers because of the constant, daily pain they often suffer from. This is a disservice to both the patient and the medical professional.

Medicare isn't doing much better with their treatment protocols of these patients. In fact all medical systems, including Medicare should be ashamed of themselves for what they make the patient go through. Treating a side effect of a disease rather than the disease itself is disgraceful. Education of this relatively common in this country medical condition is the only way to make a positive change.

The only useful test that can prove if a person does have this disease must be conducted during an attack because at any other time it is useless. The only way to be prepared for the possibility of having this disease manifest at any future time is by having a DNA test done. I would think that if there is a family history of this disease that common sense for the medical professional would be to order a DNA test to prepare for the possibility of the manifestation of this disease. However, in this world of medical rationing and inconsistency of medical standards that is unlikely to happen without people demanding this test. From: |