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Posted April 27, 2013 by Michael J. Kora in Community
 
 

Nearly 1 in 10 Americans lives with a rare disease



Did you know that the identical number of folks die every single year from idiopathic pulmonary fibrosis, or IPF, as breast cancer? And however IPF, a rare and debilitating illness that causes permanent scarring of the lungs, is nevertheless comparatively unknown.

Fortunately, the focus on uncommon illnesses like IPF is growing because they&rsquore much more widespread than we consider: when combined, they have an effect on almost 30 million, or about a single in ten Americans.

The National Institutes of Wellness says there are practically 7,000 such conditions and many are difficult to diagnose. As we celebrate the 30th anniversary of the Orphan Drug Act, a federal law to encourage the improvement of new treatments for rare ailments, progress has been made, but sufferers with most uncommon ailments are nevertheless with out an FDA-approved treatment.

A single such uncommon illness is IPF. This debilitating and typically fatal lung disease which gets worse over time, causes lung tissue to scar and thicken. Breathing is difficult for IPF patients, which can make each day tasks, like walking up stairs or undertaking errands, a challenge.

Like a lot of uncommon diseases, IPF is tough to diagnose particularly because the cause of the illness is unknown.

For this purpose, organizations like the Pulmonary Fibrosis Foundation, American Thoracic Society and Boehringer Ingelheim Pharmaceuticals are functioning to raise awareness of this deadly illness. Observances like Rare Illness Day, an international advocacy day aimed to raise awareness of rare ailments, are possibilities to additional this mission and recognize the challenges faced by sufferers.&nbsp

&ldquoThis is a milestone year for rare illness awareness and we are excited to see continued progress for sufferers with IPF,&rdquo says Dolly Kervitsky, of the Pulmonary Fibrosis Foundation. &ldquoWe are encouraged by the accomplishments of the study community, as we continue our efforts to spread awareness about the illness by means of forums like Uncommon Illness Day.&rdquo

The Pulmonary Fibrosis Foundation believes it is crucial that sufferers and those that treat them turn out to be more knowledgeable of IPF in order to far better address patients&rsquo requirements.

With no FDA-approved therapies, a lung transplant is often the final resort for people with IPF. Nonetheless, a lung transplant is rare &ndash about 30 percent of IPF individuals who are waiting for a lung transplant don&rsquot survive lengthy enough to have the surgery.

Symptoms like a dry cough that won&rsquot go away, shortness of breath or unexplained weight loss are not usually present until IPF has worsened. Moreover, the harm that IPF causes is permanent. The Pulmonary Fibrosis Foundation encourages sufferers to pay a visit to a physician if they are concerned about their symptoms.

For far more info about IPF and resources for individuals, please go to The Pulmonary Fibrosis Foundation at www.pulmonaryfibrosis.org.

This post is provided by Boehringer Ingelheim.

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Michael J. Kora

 
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