Hello everyone! My name is Liza and I am a mother to a wonderful 5 year old girl named Bree. Bree has cystic fibrosis along with a host of other health issues.
I’m a 40-year-old woman with SjS. I want to share my experiences with other SjS sufferers.
I am interested in Fibrosing Mediastinitis because my mom had this disease and is no longer living. I want to stay updated on others with the disease and keep them and their families in my prayers. Thank you!
My Mom was diagonosed with Pancreatic Cancer on 2/23/07. She has opted not to go through Chemo or Radiation or surgery.
She wants Quality of life now and not Quantity.
I have had HAE since I was 17 & at 39 have just got a doctor to do the testing to make sure. So many health issues I can’t even believe, but taking it one day at a time. I only wish Doctors were better educated on rare diseases so they wouldn’t make us feel crazy. i fought to get food Allergy tested and am allergic to beef, corn, eggs, and milk. Eliminating these items for a year now has helped a lot when it comes to my stomach problems, but they are still there. i also have 2 small lung nodules found on an ER visit (CAT scan) in Dec 2006. Now on a long jurney of testing since I have to go to a Rheum. doc, enviornmental allergy testing, insomnia, migraine headaches, possible cancer from test levels when they ran the HAE blood work. It is all real scary and so many things are not for sure. The worst part is I have 3 children and a wonderful husband that suffer secon hand when I suffer and am laid up. Not fun. I cherish everyday I’m not down throwing up or feeling sick, swollen, etc… I keep hanging on!!! Smilez:)
I was diagnosed with JME in 1995. I am happy to say that I have been managing well off of meds since 2000.
I have a 7 year old daughter with Klippel Feil.
I m a Distant Pranic Healer, Distant Energy Scanner and Pranic Psychotherapist.
I treat all kinds of physical, mental and emotional disorders without meds, without touch. without pain and without presence.
I remove coronary blockage, brain tumor and stones etc, sucessfully.
I m director to “Depollutionize Yourself & Be Transformed” program in which the entire human system is made free from all kinds of toxins, pollutants and waste materials without any effort with the help[ of latest breakthroughs like "Depollutionizing Chamber"
I conduct depollutionizing camps, worldwide, at the request of any group or organization for general mass.
I like to chat with others so I can learn how to deal with my situations, I had other chats and it helped me a great deal knowing Im not the only one that down. Maybe I can get some feedback on this site.
I myself have depression issues and would like some info. on this topic. Thank you. (petlover)
Hello; I’m Carol in Tx, and my father recently passed away from Alzheimer’s 3 months after my mother passed away from being sick. We found out she had cancer. They both previously had strokes. After hurricane Rita, alot of people’s health declined, including my father, in which his symptoms got worse. My sister finally found a facility that takes care of Alzheimer’s patients. He was there 9 months and passed away. It is not too late for me to get more answers as to how this happens. He remembered us, and even was feeding himself the last time we visited. Thanks so much for this opportunity to do this.
Hello; I’m Carol and just discovered this site. I already get alot out of it. I have asthma, anxiety, mild depression, and am a supporter of Alzeimer’s and Diabetes, all types. I’m curious what is fibromalgia?, and for
anyone else who has the same problems as I do, I welcome their comments. Thanks.
Hi! My 8 yr old son was diagnosed as severely imparred at age 3 with Apraxia. Since then he has been given a total of 9 seperate diagnoses. Although apraxia was his first, most devistating dx, we have gotten Travis to a point where no one knows there was ever a problem.
Travis has so many issues that are “layered” over each other, we don’t know which issue to address. I can’t complain though because most children with issues are in worse shape.
I’m happy to see the web site is still here. The origional apraxia chat got me through some of the worst times of my life. The biggest thing I learned from the “chat” was to “educate the people that are worth educating and forget the rest” No matter who I have dealt with in my own family, there is a level of denial that I like to refer to as “LIVING IN EGYPT” (they are living on de Nile). It has taken years for my family to even admit that my son is not like the other kids. I have found a family in the handicapped community and a support that I didn’t have before. The only true understanding you will find is in people who have walked in your shoes.
thank you for inviting me to this special place!!
I suffer from mesenteric panniculitis and would like to talk to others who do also to compare treatments, problems, etc.
I too have DI. plus a number other problems. It would be very interesting to be in contact with others with the same problem('s).
My besr friend has eosinophilic gastroenteritis.
My name is Mandi my dad was diagnosed with PC 2 days after Easter this year…they said it was inoperableat this time due to being wrapped around the main vein in the liver he started chemo 3 weeks ago and now is going thru radiation, on Monday he will recieve his pump and then will be getting chemo and radiation 5 days a week for 5 weeks then 3 more weeks just chemo then back for another CT scan.
I have multiple lipomas. I need help to reduce it.
I was diagnosed with SLE many years ago. I have lived with Arthritis since I was 7. I am 35 years old and I have 2 children. I am married. I have kidney disease, CHF, Sjogrens, Crohn’s and Raynaud’s disease, to name a few. I want to learn more about how patients are being treated. I want to be able to help others with any questions that they might have.
I was first diagnosed with IC back in the 90’s and opted for a surgery that allowed me to go in remission from re-occurring UTI’s and constant pain for about 4 yrs. IC has slowly crept back upon me and is now in full force again causing extreme pain and I have had 6 UTI’s just this year alone. I am going to a Urologist Specialist tomorrow for my first visit to discuss the possibility of an interstim in my back. Does anyone have an interstim? If so, can you tell me about it? I would appreciate anything else anyone might have to offer about pain management, etc. Thanks.