My name is Gina Starks and three years ago, at 26 years old, my life was picture perfect. I was married to the man of my dreams and had a baby on the way. But, on the night of my husband's 39th birthday, at 32 weeks pregnant, I began coughing up 1/4 cups of blood for no apparent reason. I was told to go directly to the emergency room where testing revealed a softball-sized calcified mass under my heart that had slowly sealed off all blood flow to my right lung, created a “waist” on my left pulmonary artery and had begun closing off the artery that controls blood flow to/from the head, The Superior Vena Cava.
I was told that I had cancer and was immediately transferred to high-risk hospital where I was to deliver my son, Zachary, and figure everything else out later.
After a battery of tests they finally diagnosed me with Fibrosing Mediastinitis (FM) due to Histoplasmosis, a very common fungus, found in soil of the Midwest and some eastern states, as well as, worldwide. Ninety percent of the population has inhaled the fungus resulting in nothing more than flu-like symptoms. However, in approximately one of every 100,000 people, the body reacts to the fungus/yeast by trying to "wall it off", creating calcification in and around vital vessels and airways of the heart and lungs. FM is so rare that there are only 300-400 diagnosed cases currently in the United States. Generally speaking, people don't find out that they have FM until it has caused irreparable damage to vital airways and/or blood vessels. FM is inoperable and causes many life-threatening complications.
Honestly, I don’t know which is worse, being told you have cancer, which may possibly be treated or being told that you have a potentially life-threatening disease that no one has ever heard of and there are no known cures or treatment options.
My current “treatment” is not really treatment. The only option we have is to try to catch it before it causes any more damage. I am monitored by way of CAT Scan and MRI every 6-9 months. (There is enough radiation in the CT Scan to kill me by my 50th birthday at the rate that I undergo them.) I also undergo an angioplasty about every 9-12 months due to the chronic blockage of the major vessel that controls blood flow from my upper body. This blockage is also known as Chronic SVC Syndrome. In all I have had twelve CT Scans, Seven angiograms, three Angioplasty procedures and will be on blood thinners for life. All of this has been in the last three years! I have been hospitalized so many times that I am afraid the only memory my son will have of me is one of me being hooked up to IV’s laying in a hospital bed. The need for the procedures will last a lifetime. I am not able to have any more children because of FM and thank God everyday for my son Zachary.
After receiving my diagnosis and realizing its rarity, my mission was to raise awareness of this disease so that my family and others like us can finally get some answers to the many questions we have about FM. I have found myself in the "Pageant Arena". Always a tomboy, this is a new world to me. However, it does provide a title and a platform on which to speak. Currently, I am the reigning "Mrs. New England American Dream 2007" and am working feverishly to use my title to my advantage and raise as much awareness as is possible.
Since being crowned I have been able to initiate the first ever FM Research Fund and also will be hosting the first ever FM Fundraiser this summer with many more to come. As Mrs. New England, I will have the opportunity to be granted the American Dream National title and move on to compete at the International Level, which is a huge opportunity for me to raise awareness of my disease. My ultimate goal is to inform the Nation about FM and its cause; Histoplasmosis. I believe that many more people have FM and are unaware of its presence due to lack of knowledge throughout the medical community.
Throughout my reign and beyond I will remain an activist in this grassroots effort and will not stop until a cure is found!
Please some of the following websites to obtain more information regarding FM, Histoplasmosis and how you can help!