Porphyria Patients Seek Help in ER's Denied Treatment

In serious pain and panic, I drove 40 miles to a teaching university's emergency room to seek treatment. After being told I could not be treated for my rare disease porphyria, I am left hopeless.

(PRWEB) June 11, 2004 -- Orphan Diseases: Why Cant We Get Help?

I was determined to get the correct medical attention, when my porphyria attack began. I drove myself 40 miles to a teaching universitys emergency room. I was not going for the pain medication, I am fortunate enough to have those at home. The reason for my determination in making this long drive was for a far more selfish need. I need a treatment plan. In order to get a comprehensive treatment plan, I have to follow the procedures of my specialist. There are many problems in following the procedures; the first and most common would be that my porphyria attacks are intermittent. Therefore I cannot schedule an appointment and be sure to bring my attack with me. If it were that easy I wouldnt be reaching out for help. Secondly, emergency rooms are not equipped and their staff are not educatated to care for porphyria sufferers.

Porphyria is a metabolic disease of the blood, the part of the blood that carries oxygen and the coloring called heme do not process correctly and causes an attack.

After much difficulty and in excruciating pain, I arrived at the emergency room and followed the normal ER procedures. Following my specialist's instructions, I not only asked the ER personnel but also wrote it on my triage sheet to page my doctors office for special instructions. Four hours later I left the emergency room in the same condition I arrived. It seems the emergency room could not treat me for Acute Intermittent Porphyria; they did not have a diagnosis for me on file. I asked them to page my doctor, they did not. I left of my own accord because the people who were there did not understand porphyria. It has been this way for me all of my life. Porphyria is listed in the National Organization of Rare Diseases. There is also a foundation dedicated to porphyria. The way I see it, I am suffering from a rare disease because there is a lack of education among the average medical professional. I know of many other people who are suffering from porphyria and being un-treated and mis-treated. Just recently a close friend, also had a porphyria attack, she attempted two hospitals over a period of three days, she overheard one of the emergency room staff refer to her as a "frequent flyer" or one who seeks narcotic drugs. She did as I did, went home defeated and hopeless. When we make the effort to go to the hospital's emergency room, we want treatment with IV Glucose and panhematin, of course in the process we do need serious pain killers. The pain is one of the worst symptoms, yet we know that pain meds alone will not make the symptoms go away.

How can this happen in America? A country where out of the ordinary is usually ordinary", this brings me to my question to the medical communities everywhere: Why cant we get help?
Tonya Love AIP Alabama

If you would like to contact me in regards to this article you may call 205-620-3855.