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519 Supporters

Created by Gina Starks on February 1, 2007, 7:46 pm

My name is Gina Starks. I am 29 years old and married with a two-year-old son. I also happen to be battling a very rare and life threatening lung disease. Fibrosing Mediastinitis (FM).

FM is a reaction to the inhalation of a fungus (Histoplasmosis) that is in the soil of the Ohio-Mississippi River Valley Area and is found worldwide. Currently there are only 300-400 people in the U.S. diagnosed with FM. Many others have FM and are unaware that it is taking over vital vessels and airways in and around the heart and lungs. FM is inoperable and causes many life threatening complications, including repeated stent placements and angioplasty procedures, which are potentially life threatening as well. FM is diagnosed in people that are in the late 20's to mid 40's. It is hard to diagnose due to the age of the otherwise healthy patients. Doctors are not aware of FM and therefore do not know they need to test for it. The only diagnostic procedure that indicates FM's presence is a CT or MRI exam. Doctors do not generally order CT's and MRI's for young patients that present with the broad range of symptoms FM creates: shortness of breath, chest pain, blood streaked sputum, etc.

I started this petition because I am trying to raise awareness of this disease so that some research may be started. Currently there is no research and no known treatment. This disease is unknown.

The NIH and the CDC do not recognize FM as a disease. This fact makes it extremely difficult for those affected with FM to file and receive necessary disability and more importantly, it is difficult to find answers without research...

Please take the time to sign this petition and get FM recognized by our government.

I refuse to let this life-threatening disease take me and others away from family and friends!

Thank you for your help.

Gina Starks
      


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Petition Signatures


519 3 weeks ago    Kelly Bryant: I support this petition in the name of my son, Charles Dobyns who suffers from this disease at the age of 18.
518 13 Jul 2008 - 18:47    Shelley Mills : I support this petition. Please help these people get some relief. They are sick enough.
517 13 Jul 2008 - 12:13    Jann CHristiansen : I support this petition.
516 12 Jul 2008 - 17:56    Karer Netherton : I support this petition.
515 12 Jul 2008 - 17:13    Adrienne Heuer : I support this petition.
514 12 Jul 2008 - 14:00    jane butters : I support this petition.
513 12 Jul 2008 - 3:01    pam brown : I support this petition.
512 11 Jul 2008 - 13:21    Gale Michel : I support this petition.
511 11 Jul 2008 - 12:09    Carol DeLater : I support this petition.
510 11 Jul 2008 - 6:12    Gwenn Yaple : I support this petition.
509 11 Jul 2008 - 6:07    Marjean Cline : I support this petition.
508 11 Jul 2008 - 4:44    Ann-Marie Searle : I support this petition.
507 11 Jul 2008 - 1:16    J. Giffin : I support this petition.
506 11 Jul 2008 - 0:44    Mari : I support this petition.
505 10 Jul 2008 - 23:25    Cindy Tipton : I support this petition.
504 8 Jun 2008 - 18:55    lisa hendricks : Please help fund research
503 30 Mar 2008 - 1:17    Carol Wood : Just diagnosed w/ acute fibrosing mediastinitis. Airway is almost completely blocked due to calcifications surrounding
502 25 Mar 2008 - 2:15    noragomez : i believe everyone should support this cause
501 14 Mar 2008 - 6:23    Jennifer Barnard : I am a survivor of this horrible illness and was misdiagnosed for over two years because doctors are unaware of this condition and assumed I was a hypochondriac. It nearly killed me, left me with a heart murmur but by God's grace alone, I was healed through a last ditch medical effort on the part of my infectious disease doctor. Please make this disease recognized so others won't suffer the way I did! Thank you!
500 13 Mar 2008 - 3:12    Kathleen Cruden : The rarity of a disease does not make it unimportant. Great minds are lost in any war, no matter what the scale. It's been said that the two World Wars destroyed some of the finest minds of the 20th century, thereby depriving humanity of untold advances. FM is a battle fought on a much smaller field, but it poses just as great a threat to all of us. Consider the potential loss of that one leader who might bring peace to the world, of the only scientist capable of preventing the next pandemic, of the philosopher most able to light our way to personal happiness, of the many artists who would bring us joy — and above all, to the loved ones whose impact on our future is immeasurable. Can we stand by and let FM steal so much from us?
499 10 Oct 2007 - 19:07    Kat and Tanner Hunter : Please help them find a cure for our Mommy and all those with FM
498 17 Sep 2007 - 15:14    tommy :
497 1 Sep 2007 - 16:38    Christie Scott :
496 27 Aug 2007 - 23:13    Adrienne Anderson : My daughter, age 46, hasideopathic FM, and hashad for 11 years. You mustacknowledge this disease.There are just too many young people being afflicted and more being diagnosed. Help us!
495 24 Aug 2007 - 22:33    Patricia Kemble : My Dad died august 18,2007 at age 81 of complications of this illness. Please help to find a cure.
494 21 Aug 2007 - 12:13    Jean Perret :
493 17 Aug 2007 - 16:25    John McGee :
492 15 Aug 2007 - 15:43    gailene jaques :
491 14 Aug 2007 - 15:08    Tammy Uren :
490 13 Aug 2007 - 14:45    Jill Reeves :
489 12 Aug 2007 - 17:47    Tina Owens : this is terriable these ppl need help please help them
488 6 Aug 2007 - 21:07    Debra A. Yankee :
487 3 Aug 2007 - 22:12    Cindy Stiver : I have recently learned that I also have histoplasmosis
486 3 Aug 2007 - 22:03    Karen Davis :
485 3 Aug 2007 - 13:36    Barbara Schober :
484 3 Aug 2007 - 11:37    Anna M.Stover :
483 3 Aug 2007 - 10:38    Sharon Beecher :
482 3 Aug 2007 - 5:05    Onna Addis : Please take care of this dear woman, who is a strong part of the community. Get her the insurance coverage she needs and alive and well and strong again.. Love,Onna
481 2 Aug 2007 - 23:24    Deborah Pflanz :
480 2 Aug 2007 - 17:46    Joan Bowman :
479 2 Aug 2007 - 16:47    C A Phillips :
478 2 Aug 2007 - 15:47    Pat Hauge : Insurance should pay for any necessary treatment for ANY disease no matter how rare
477 1 Aug 2007 - 13:31    Catherine Bond :
476 31 Jul 2007 - 23:05    linnea zoyes :
475 31 Jul 2007 - 20:19    Pamela Nichols :
474 31 Jul 2007 - 14:48    Richard Walton : I may have FM
473 31 Jul 2007 - 3:09    Jackie Cunningham :
472 30 Jul 2007 - 13:23    Kathy Holden :
471 30 Jul 2007 - 6:32    Pamella Coghill :
470 30 Jul 2007 - 4:54    Ellen Chasse :
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