"Porphyria..."
Below you will find the definition of Porphyria as well as very helpful links to help you understand this very complex medical condition.
What is Porphyria?
These porphyrins are normal body chemicals however, they normally do not accumulate. The type of chemical that builds up in their body depends upon the type of porphyria that the individual has. There are several types of porphyria that have been given an official "medical term." There are also mutations of this disorder that have yet to be given a name.
Each day doctors are learning more about this disorder. It is my belief that many individuals are not being properly diagnosed with porphyria due to the lack of knowledge and because it's symptoms are similar to other, more common diseases.
Below is a list of some of the forms of porphyria.
Acute Intermittent Porphyria
Variegate Porphyria
Hereditary Coproporphyria
Protoporphyria
Porphyria Cutanea Tarda
Congenital Erythropoietic Porphyria
ALA-D Porphyria
Symptoms:
The following are some of symptoms associated with these disorders. Please note this is not a complete list of symptoms and that these are the most common one's noted. An individual may have a couple or several of these syptoms depending on the type of porphyria and the severity of their condition. Some may be cyclic in nature and appear only during severe attacks and some may occur frequently between attacks.
- abdominal and/or back pain
- urine of "some" patients is a purple-red color.
- urine "may" change color once exposed to light
-mood swings
-increased hyperactivity
- nausea and or vomiting
- constipation (at times)
- sensitivity to every-day chemicals such as fumes/cleaning agents.
-may exhibit increase allergies and infections due to decrease immune system
- tachycardia
- hypertension
- pain and or cramping in limbs, neck and/or chest
- muscle weakness
- sensory loss
- fine tremors
- restlessness
- excess sweating
- disorientation or paranoia
- may have skin lessions
-excess hair and fingernail growth.
- anxiety
- insomnia
- depression
- sun sensitivity
- seizures-partial and or Tonic Clonic
-brain Fog ~feeling~
- headaches
Porphyria Web Links
I think most people when they find out that you, a member of your family ,loved one, student, client, patient, friend or co-worker has "Porphyria" they say the name out-loud (if they can ha!) and then they want to know more about the disorder. Usually they have never heard about it or if they have their Knowledge is limited.
These Pages below have been the most helpful to me:
If you are seeking information about an adolescent with Porphyria please be sure to read "The Girl who Mewed". You will find the link below.
If you have other helpful websites please share them with me and Oh...by the way...Please be sure to read the disclaimer at the bottom of the web-page. Thanks!
"Patient Guides for Porphyria"
"Patient Guide"
Information about Porhyria. Includes an "Unsafe" Drug list for people with Porphyria. This drug list is very helpful in that it is catagorized by type of medicine.
"Unsafe Drug List for Porphyria Patients"
This is a good resource. Please be patient while the page loads. There is also a useful guide also.
"Individual Web sites"
Cheryl's Family Page-
A great friend...her page has many links and information on a variety of subjects, including porphyria. She is a member of the Porph Team .
Cheryl Ann´s Porphyria Page
A wealth of information about Porphyria and links
Mara´s Porphyria Page
- Her own story along with alot of valuable information
Mary´s Safe Arbor
- Mary'a site is full of a ton of health/Family and Christian links.
Pat´s Porphyria Page
Information and Links
Katherine's Vision
Information and Links.
Holly's Haven
The Playground - for children and teens with Porphyria