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My Porphyria Journey |
My name is Patricia and I live Lithia Springs, GA. In March 1998 I was diagnosed with Hereditary Coproporphyria. This diagnosis was reached after years of searching for answers to numerous health related problems. Hereditary Coproporphyria is also known as HCP. It is an inherited autosomal inherited metabolic disease. Symptoms of this disease manifest when there is an overproduction of porphyrin in the liver. It is also known as a hepatic form of porphyria which also has cutaneous aspects as well. I am the mother of two children, ages 28 and 22. Pregnancy was very delicate with both. After my second child, my daughter, was born I had a hystorectomy at age 24, after which I had ten years of on and off health problems. Finally culminating in extreme abdominal pain, nausea and vomiting. Tests were done for 2 months and of this two month period I was hospitalized for ten days. Unable to determine the problem a exploratory lap was performed, a diagnosis of intestinal adhesions was given. During the period that followed I had 5 more surgeries that were diagnosed as adhesions. After a period of time I started having bone and joint pain, diagnosed as costrocondratis and bursitis. Due to upper abdominal pain, testing began again, due to the pain being so high numerous test were done on my heart... diagnosis of Mitral Valve Prolapse, non-regurtating. Abdominal pain, nausea and vommiting again reared it's head... Again after numerous tests a diagnosis was made that my gall-bladder had stopped functioning and was removed. And then many times the abdominal pain, bone and joint pain, migranes, nausa, vomitting, diahrea. Pain so severe in legs and hips unable to walk unassisted. Finally we get to the middle of 1997, pain, nausea, vomitting, tests and more tests. The decision was made after some tests indicated "fatty" and enlarged liver that maybe my pancreas was not functioning properly. I have frequent bouts of hypoglaucemia. An ERCP was performed Oct 1997, resulting in Acute Pancreatitis. Hospitalized for 7 days. I was then taken off work indefinitely. More tests, exploratory surgery, again few adhesions were found, pain did not go away. My gastro doctor finally decided to do a 24 hour urine test. At the time I was suffering extreme abdominal pain and nausea, urine was "tea" colored. After waiting for 2 weeks for the test to be completed a diagnosis was given of Hereditary Coporphyria. My doctors office was stunned. They had no information to give me. Only that it was seroius and incurable. I was sent to a Hemotologist, he knew very little of the disease. Again more testing, but not for porphyria. As my medical leave had been long, my employer terminated me. I had no insurance and no income. Unable to pay for doctors visits and also unable to locate a physician knowledgeable and willing to treat a Porphyria patient I have had to rely on emergency rooms. Neither of the local Emergency Rooms want anything to do with me and one even said so. I was given unsafe medication by one Emergency Room doctor. Througout all this I have been given unsafe pain killers among other drugs. This is a disease I had never heard of. I went on a misson of searching for treatment, to no avail. None of the medical books I had access to had enough information. I turned to the internet and found the answers I needed to at least keep me alive. I went through a terrible state of depression and wanted to die. . The world needs to know about Porphyria, our health care providers need to be educated on how to diagnose and treat a porphyria patient. Right now all you get is "oh, so you have porphyria, that's a very rare disease". Now go away and leave me alone. This attitude has to change. Hopefully my story can help someone else in some small way. I will be happy to share it and talk with anyone. |
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