- Featuring Gina Starks, Mrs. New England American Dream -

My Story

By Gina Starks

Gina Starks

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 and from the head.

I was told that I had cancer and was immediately transferred to a 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 a common fungus called Histoplasmosis, 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 to 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 blood vessels. FM is inoperable and causes many life-threatening complications.

Gina Starks with son, Zachary

Sadly there are no known cures or treatment options for FM and due to lack of awareness thousands are going undiagnosed.

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 to 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 12 to 24 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. The blockage is caused by FM and is inoperable. The need for the procedures will last a lifetime. I am not able to have any more children because of FM and I thank God everyday for my son Zachary.

Since my diagnosis, my mission has been 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 this disease. What is life expectancy? Is child bearing an option? What treatments are available?  These are just a few of the concerns one has when dealing with FM, and currently there are no answers and no research funds being allocated to find any of these answers.

Unfortunately, there are few resources that provide information for patients with FM. The Web sites listed at the right are very informative and I urge you to look at them to find out more regarding this very rare and life-threatening disease.

Fibrosing Mediastinitis

Petition Spot

To contact Gina Starks, visit her Web site Mrs. New England American Dream 2007