Aa
Born with Congenital Varicella Syndrome, Need Help?
About Me: Female, 38, Tarpon Springs - FL, member since Jul 2010
I am 38 years old and my mother contracted Chicken Pox in her third trimester of pregnancy with me. She went into spontaneous labor when she started getting ulcers, fevers, etc. They Quarentined us and within 12 hours I was covered with Chicken Pox head to toe, in my ea rs, nose, everywhere. My whole life I have had recurring Shingles and medicine does not seem to control it. I get them from the right trunk region, to rectally, vaginally, my mouth, nose and internally. I have been suffering with many internal problems from sphincter valve (Oddi dysfunction) removal of gallbladder, neurological, my nervous system, twisting of my spine with DDD, Bulging & Ruptured Discs, Leaking CSF fluid, Tarlov Cysts, and I have seen many doctors, but none that know how to manage what is happening. It is progressing as I get older and similar to a muscular dystrophy & the pain, outbreaks, and symptoms are getting to the point I have been hospitalized in ICU with a problem with my CSF fluid of either Aseptic Meningitis or Encephalitis type infection, more than once. They have diagnosed me with Behcet's Disease, but they are debating this diagnosis, due to having ulcers of Pyoderma Gangrenosum(Rectally, Facial, Vaginally), plus Herpes type 1 & 2, Shingles, Erythema Nodosum, Tumid Lupus, and Cataract in my left eye, they flutter side to side and more. I have 3 daughters and they all show similar symptoms and they also cannot find help. My family & I are desperate for help, do you know of anyone who has had been born with Congential Varicella Syndrome and have had long term debilitating disease? Current diagnosis from Genetics from Duke University, University of Florida : Congenital Varicella Syndrome, Ehlers-Danlos II, Behcet's Disease, All ulcers have been biopsied and still doing so. I have spent my whole life trying to save it and prevent my children from going through the same. My mother/Father/brother have nothing like this at all, but me and my children do...please help.
I am 38 years old and my mother contracted Chicken Pox in her third trimester of pregnancy with me. She went into spontaneous labor when she started getting ulcers, fevers, etc. They Quarentined us and within 12 hours I was covered with Chicken Pox head to toe, in my ea rs, nose, everywhere. My whole life I have had recurring Shingles and medicine does not seem to control it. I get them from the right trunk region, to rectally, vaginally, my mouth, nose and internally. I have been suffering with many internal problems from sphincter valve (Oddi dysfunction) removal of gallbladder, neurological, my nervous system, twisting of my spine with DDD, Bulging & Ruptured Discs, Leaking CSF fluid, Tarlov Cysts, and I have seen many doctors, but none that know how to manage what is happening. It is progressing as I get older and similar to a muscular dystrophy & the pain, outbreaks, and symptoms are getting to the point I have been hospitalized in ICU with a problem with my CSF fluid of either Aseptic Meningitis or Encephalitis type infection, more than once. They have diagnosed me with Behcet's Disease, but they are debating this diagnosis, due to having ulcers of Pyoderma Gangrenosum(Rectally, Facial, Vaginally), plus Herpes type 1 & 2, Shingles, Erythema Nodosum, Tumid Lupus, and Cataract in my left eye, they flutter side to side and more. I have 3 daughters and they all show similar symptoms and they also cannot find help. My family & I are desperate for help, do you know of anyone who has had been born with Congential Varicella Syndrome and have had long term debilitating disease? Current diagnosis from Genetics from Duke University, University of Florida : Congenital Varicella Syndrome, Ehlers-Danlos II, Behcet's Disease, All ulcers have been biopsied and still doing so. I have spent my whole life trying to save it and prevent my children from going through the same. My mother/Father/brother have nothing like this at all, but me and my children do...please help.
How is your son? I live in the Uk and my grandson has this please get in touch
Hello Catherine I dont know if Im doing this right so I hope you get this message. My 14 year old son Grant has congenital varicella syndrome I have found it very frustrating over the years that the medical profession seem largely ignorant about the syndrome and all just want to treat just thier speciality and he doesnt get treated as a whole. I have never met or talked to anyone else that has the syndrome and would loved to have found some kind of support group but its probably too rare. My heart goes out to you more than I can say, take care Rachel
Have an Answer?
You are reading content posted in the Infectious Diseases Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
