Idiopathic Edema or Increased Cellular Permeabiliy Syndrome
ABOUT
My name is Eileen Herceg-Brown. I am a retired registered nurse and have a degree in Human Services. I tell you this as it helped me navigate some things more easily. I was diagnosed in 2006 with a genetic disorder of Idiopathic Edema. The new name for this disorder was Sympathetic Neural Hyperalgesia Edema Syndrome, and is now called Increased Cellular Permeability Disorder. I know it is quite a mouthful of words. ;-) This is a genetic disorder. It may be a hypofunctioning of the Sympathetic Nervous System. I have always known something was medically wrong but no doctor could explain or effectively treat my symptoms.
My abdomen became so swollen at times that I looked about seven months pregnant. Sometimes I had fluid under my eyes when I awoke in the morning. I had chronic constipation and slow digestion. During menstruation was even worse. I could go to work wearing clothes that fit fine in the morning, and later that same day returning home with the zipper or buttons opened as I was so swollen. I always wore loose tops because I knew I may start to swell over the course of the day. I had minor problems with temperature regulation as this disorder affects the peripheral vascular system. Due to a doctor insisting that I needed certain supplements, this problem became much worse.
I have found people on various sites that I have been able to help but wanted to reach out to people on a greater scale.
In the past I had been just dismissed by doctors or who assumed it was psychological because they didn't understand this disorder or how my symptoms went together. Sometimes their egos could not admit that they did not know something.
This site is for you so you can recover your health and have a place where people understand what you are going through. Take your time as there is a lot of information to navigate but you can start to understand right away what is going on in your body and how to help yourself. We can learn from one another and gather support, knowing we are not alone. Much love and looking forward to welcoming you to our group.
"There is evidence that increased capillary permeability in the standing position is related to a deficit in the sympathetic nervous system. The leakage of this fluid leads to various clinical conditions which frequently puzzled the consulting physician because despite the frequency of this condition, intelligent physicians and patients are unaware of the cause of their condition." (Dr. Jerome Check, MD)
You may have an array of symptoms in addition to your edema. Some individuals have no edema. The symptoms may not seem to go together but you must keep in mind that the symptoms may be caused by a hypo-functioning of the sympathetic nervous system and an increase in capillary and/or tissue permeability. Some of the symptoms may be fluid retention, pelvic pain, digestive issues, constipation, systemic or localize itching with no apparent cause with or without hives, problems in the genitourinary system, the nervous system, the musculoskeletal system, and the endocrine system. You may be experiencing hormonal problems or shifts and other symptoms relating to the sympathetic nervous system. Many of us experience abdominal swelling or a more systemic effect involving the legs, hands, and fluid under the eyes.
All information is from my personal experience and from others with similar symptoms. All research articles can be obtained from my email address on the contact sheet. I have posted excerpts from research articles on the Research page of my blog. I am a retired Registered Nurse which makes it a bit easier for me to understand my disorder and the medical jargon many find confusing. In this litigious society I must say I take no responsibility nor prescribe any treatment for this or any disorder. It is a guide to help you find the answers to your health concerns. Love and Light, Eileen