Take things one day at a time. Know that the going isn't always easy and the path isn't always smooth. Your journey with your health is exactly that, a journey,…
Just bringing some awareness to a disease you may not have heard of, especially since it only effects 1 in 2 million people. It's called Acquired Hypoprothrombinemia. This happens when the…
Illness isn't always pretty even when it's "invisible". What your peers might not see, your family and significant other probably has a little more insight to. In sickness and in…
This September #BlueUp4PF! September is IPF Awareness Month. Show your support and help by taking a picture of yourself sporting as much blue as possible and sharing it with the…
Communication is key, and it's extra-important for patients with rare diseases. Be sure to communicate with your doctors; how you're feeling and what you want to know. Communicate with your…
When it Rains look for rainbows. When it's dark Look for stars. Just some positive words for those going through rough times. It may seem like everything is dark now,…
Acquired Hypoprothrombinemia is a disease that only effects about 1 in 2 million people. A.H. is when the body is lacking the protein Prothrombin that synthesizes Vitamin K and causes blood…
IPF or Idiomatic Pulmonary Fibrosis is a disease that causes scarring and stiffness in the lungs making it hard for the lungs to move oxygen into the bloodstream, the brain…
This September is IPF Awareness Month. Write to your governor, mayor or city council member and proclaim it for your city or state. Bring your community together and make a…
This September is IPF Awareness Month. The slogan this year for IPFWorld.com is Breath of Hope! Help raise awareness by Blowing Soap Bubbles, or dress up in blue and post…
September is IPF Awareness Month. Take a picture of yourself blowing bubbles and share them to help the cause! Use #IPF and #IPFWorld and challenge the world to join in!…
Active listening is important. Your health care provider needs to know not only your symptoms but also your concerns so that they can adequately address them. Arguably this is even…
It is my sincere hope that everyone has a life full of moments that are so great they take your breath away and remain in your memory forever. Unfortunately there are…
Everything that you do is more impressive than if the average person did it, because you're not average. Everyday you're combating a rare disease on top everything else. Everything you…
With less than 200,000 cases per year, Neonatal Respiratory Distress Syndrome (or Neonatal RDS) occurs when a child's lungs have not fully developed and are lacking the substance surfactant, which helps…
Lisa is living with Myasthenia Gravis, you can read more about her journey here. Was this true for you too? Once you fully accept your diagnosis you can focus your…
Paroxysmal nocturnal hemoglobinuria, or PNH, is a hematopoietic stem cell disorder. Hematopoietic stem cells are developed in the bone marrow, where they grow and eventually develop into red blood cells, white…
Don't lose your optimism or courage and don't ever give up. Illness isn't easy, but don't let it steal from you.
You may not recognize what ALS (Amyotrophic lateral sclerosis) is, you may recognize it as Lou Gherig's Disease, or that disease that Stephen Hawking has. It is a terrible disease that…
You may not know this but Shakespeare's signature is super rare, there are only six known authentic signatures of his in the world. You know what else is rare? People…
With chronic illness, rare disease, and life in general, there are always going to be rough patches where you start to lose hope. It's impossible to keep a positive, upbeat…
Mycosis Fungoides is a rare type of lymphoma cancer. Most often, it causes skin lesions called patches that are flat, scaly, pink or red areas on the skin that can be…
Living with an illness is going to impact you, there's no way around it, being sick Isn't something to be taken lightly How does it influence you? Despite the toll…
Glanzmann thrombasthenia is a bleeding disorder where the proteins that make up receptors on blood platelets are either missing or not working properly. This causes: Easy bruising Nose bleeds Bleeding…
Have you been this for somebody? Has someone done this for you? Even simple things can improve someone's day and brighten their life, so why not try? KNowing someone's breathing…
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