IPF (Idiopathic Pulmonary Fibrosis) Awareness Month is coming up in September. To help raise awareness post something on your favorite social media site and use #IPF #IPFWorld #BlueUp4PF! Go to…
Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff, making it harder for a person to breathe and preventing the lungs from properly…
September is IPF Awareness month, I always love seeing the little things you can do to help raise awareness and involve anybody. I wish they could all go viral like…
This September, Chicago is having a Hike for Lung Health to help raise awareness for IPF. If Chicago is to far for you to go to participate then organize a…
No doubt there's strength in numbers. Maybe your family friends offer unending support that boosts you when you're low. Maybe you participate in a local support group or are part…
September is IPF Awareness Month. A great way to raise awareness is by engaging your community. Write a letter to the editor of your local newspaper and share your story…
Broken crayons still color an regardless of whatever part of your body is not cooperating with you, you are not any less beautiful, purposeful, and important. The colors of your…
Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff making it harder for a person to breathe. When the tissue thickens the…
There is a campaign to help raise awareness on IPF World called Blowing Soap Bubbles. This is the reasoning behind their campaign, "Blowing soap bubbles is a joyful activity. When…
While you are traveling on your summer vacation, you should stop to help raise awareness for IPF this September. Take a picture of yourself at a popular destination and use…
Count your blessings, today and Everyday, It is a blessing just to breathe. Sometimes life moves so fast you can forget to count your blessings. Really it is a blessing…
DBHD or Dopamine Beta-Hydroxylase Deficiency, is a very rare condition that has only been diagnosed in 20 people. It affects the autonomic nervous system, which controls involuntary body functions like the regulation…
Glomerulonephritis is a disease where the Glomeruli, located in the kidneys, are damaged, keeping them from properly filtering waste and fluids from the body. Often times, the cause for this…
Surprises often aren't welcome when it comes to your health. Working with your healthcare team to develop reasonable expectations and general timeline can be comforting to many. Do you create…
Life is hard, Breathing should be the easy part. Breathing should be the easiest thing to do in life. It is an automatic body function that we do without thought.…
IPF Awareness Month is this September! Go to these links to get involved: Blowing Soap Bubbles #BlueUp4PF Proclaim it for your city or state. #WhereInTheWorldIsIPF Here are some links for…
This quote is by Patient Worthy Contributor Lisa D. check out some of her articles to learn more about her story: Meet Lisa D. The Best Thing You Can Do…
Where in the world is IPF? To help raise awareness for IPF this September, take a picture of yourself at a popular destination and use that location to help raise…
Kids with rare diseases will often be dealing with doctors for their entire lives and helping them find their voice along the way is important. Letting your child speak to…
Bravery is something rare disease patients know a lot about. They may be scared before a procedure, and understandably so, but more than likely they've done their research and they're…
You're probably thinking "Yes, I would like to know what that causes... but first of all, what the heck is TFAP2B?" TFAP2B is a gene that has a hand in…
Family members can offer emotional and moral support during trying appointments but they can also be your back-up. If you have a lapse in memory or aren't sure how to…
There are only a handful of people in the entire world with Char Syndrome. Char Syndrome happens when a person is born with mutations in the TFAP2B gene, which hinders the…
Eisenmenger Syndrome is a condition that occurs in some people who were born with heart defects. Sometimes those defects will cause a hole in the heart to be formed which causes…
That should be easy right? Unfortunately for some, like those with IPF, it is not that simple. Their lungs produce scar tissue that prevents the body from getting the oxygen…
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