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Porphyria
Is anyone out there dealing with one of the forms of porphyria. I have Hereditary Corporporphyria and am almost always symptomatic, with sporadic sever attacks that cause seizures (along with a host of other fun symptoms) and land me in the Er or hospital. I need some support....it's extremely rare and I am struggling. It's a neurological disease, metabolic, gastrointestinal, and ultimately is in the liver.
Hi, I know this is extremely late but I've just been diagnosed with hCP as well and was looking for a support group or someone to talk to. I feel a bit isolated and lost. Like you I'm symptomatic all the time and have frequent attakcs once or twice a month that land me back in the ER. I've taken to wearing a med bracelet just incase becasuse i had one instance where the pain became so debilitating it was hard to breathe let alone speak. please if you want email me. roxanne. martin 0 0 2 @ gmail . com... without the spacing
Thank you very much for taking time respond. I had not heard about the beta-carotene supplements or choroquine. I will try them. I try to keep hydrated, but chronic nausea/vomiting thus leaves me chronically dehydrated, in which I receive IV fluids. I attempt to manage my glucose and carb intake, which helps somewhat. The severe attacks are random, but I am symptomatic even when I am not having an attack. Specifically spinal pain, numbness/tingling from my knees down, severe depression,...and the list goes on. I have read everything on porphyria foundation website and eliminated as medications as possible. I will read the link you provided. Again, thank you very much.
MEDICAL PROFESSIONAL
Hi,
How are you? Hereditary coproporphyria is an autosomal dominant form of liver porphyria. The treatment usually depends on the symptoms present. Aside from medications, beta-carotene supplements, chloroquine, as well as plenty fluids and glucose to boost carbohydrate levels has helped. There was a previous post on this forum that may help: http://www.medhelp.org/posts/Rare-Diseases/PORPHYRIA/show/1314560
Take care always.
How are you? Hereditary coproporphyria is an autosomal dominant form of liver porphyria. The treatment usually depends on the symptoms present. Aside from medications, beta-carotene supplements, chloroquine, as well as plenty fluids and glucose to boost carbohydrate levels has helped. There was a previous post on this forum that may help: http://www.medhelp.org/posts/Rare-Diseases/PORPHYRIA/show/1314560
Take care always.
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