Please take a moment to introduce yourself to the community. Everyone here has something to share about Fibrosing. For the discussion boards, we ask that you keep your full name and location private.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
I am a single parent of three wonderful angels. I have a daughter, seen in my photograph, and two unique and wonderful boys. My two sons were both born with an extremely rare genetic disorder known as “X-Linked Alpha Thalassemia Mental Retardation Syndrome” Both boys are have sever developmental delays. Both are non-verbal and communicate with limited signs. They love to laugh and are easily entertained by the small things in life.
Founder of the TransGlobal Health Community Center at http://transglobalhealth.com
I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat 
I am actually interested in fibrosing mediastinits, which wasn’t listed, but hoping to find others with this disease, it is a rare disease, mine is idiopathic not histoplamosis.
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!
I have been diagnosed with this disease since Oct 2004 and would just like to know how it effects other people. I would like to know what kind of successful surgeries and stenting other people have had in the heart-lung area.
I would like to know how other people deal with the effects of the disease.
I was diagnosed in 1999 with FM. I have 2 left pulmonary artery stents. I grew up in the Ohio Valley and now live in Ashland Oregon. I am 44 years old. My story is online at http://tjaskren.com/fibro.html
My 32 yr old daughter has FM and it has been impossible to find anyone or anything about this disease. Until now! I feel so blessed to be finding some great sites. My daughter was told that stents won’t work because her SVC is totally crushed. Her body has developed collateral veins though.
Hi… My Name is Martha. I was diagnoised with Fibrosing Mediastinitis over 7 years ago. It has been a up hill and down hill journey that I have been placed on but finding others who are traveling this journey also has helped. Having a place to come to and to share with others who understand what I have gone through and still continue to go through.
I am afflicted with Fibrosing Mediastinitis and I share a common bond with an extremely small number of incredibly intrepid folks, who undoubedly cherish life as much as I do, but have come to realize what a tenious and precious gift life truly is.
I have had this disease since 1978.
HELLO MY NAME IS BRENDA I HAVE FM BOTH LUNGS ARE AFFECTED I HAVE A STENT IN THE RIGHT SIDE GOING TO MY HEART THE LEFT SIDE WAS TO BLOCKED TO DO ANY STENTS. I WAS DX ALMOST A YEAR AGO I HAVE LIVED ALL MY LIFE IN MISSOURI
Hi my name is ashley and i would like to join this group because i am struggling with the same thing you are.I am from Jonesville, Michigan
My daughter was diagnosed with this condition 5 yrs. ago
I want to learn more about this cause nobody knows any thing about. All I know is that ever one in the world has had the hystoplasmosis (thats what you get before you get the life threatin scarring that i have) and maybe 20 people get the fibrosinig mediastininitis!!! Can you imagin 300billion people get the hystoplasmosis but maybe 20 people get this rare fatel disease Fibrising Mediastinintis!! I would like to know of any body else who has had it or know some some body who has had it (REST IN PEACE)!!!
I was just recently (6/13/07) diagnosed with Fibrosing Mediastinitis. I know very little about this condition and I’m interested in learning more and chatting with others with same condition.
I also suffer from FM, I was diagnosed approximately 1 month ago, after months of trying to figure out what was wrong with me.
I have Idopathic FM, which has nothing to do with Histoplasmosis, I am 43 years old and from Ontario, Canada. Where do you live?
I am trying to find anyone from Canada that suffers from this disease, but so far i have come up empty handed, if anyone knows anyone from Canada who is afflicted by this disease please let me know.
You are all in my prayers, God bless you all!
Mary
Babeedeedee
I have fibrosing mediastinitis and I have NEVER had histoplasmosis. I have idopathic FM, which means that it came on suddenly and very quickly. It took them a little while to figure out what I had but in the end it came out as FM, I had a biopsy and histoplasmosis was not found, so not everyone has histoplasmosis before they get FM.
Go to this web site it might help:
www.fibrosing-mediastinitis.com or just google it and you will find some information
I have fibrosing mediastinitis. I would really like to meet some people with the same.