meme – Page 3 – Patient Worthy

Meme- Persevere No Matter What

Post author:Rebekah
Post published:July 25, 2016
Post category:Rare Disease

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,…

Acquired Hypopro… What?

Post author:Kristen Lord
Post published:July 22, 2016
Post category:Acquired hypoprothrombinemia Rare Disease

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…

Meme: Sexy Illness

Post author:Rebekah
Post published:July 22, 2016
Post category:Rare Disease

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…

#BlueUp4PF – IPF Awarenss

Post author:Kristen Lord
Post published:July 21, 2016
Post category:IPF Rare Disease

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…

Meme: Communication = Goals

Post author:Rebekah
Post published:July 21, 2016
Post category:Rare Disease

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…

Looking For Rainbows?

Post author:Kristen Lord
Post published:July 20, 2016
Post category:Rare Disease

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,…

Meet AH

Post author:Kristen Lord
Post published:July 20, 2016
Post category:Acquired hypoprothrombinemia Rare Disease

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…

Do You Know IPF?

Post author:Kristen Lord
Post published:July 19, 2016
Post category:IPF Rare Disease

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…

Let Your Community Know You Care About IPF!

Post author:Kristen Lord
Post published:July 19, 2016
Post category:IPF Rare Disease

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…

Breath of Hope for IPF

Post author:Kristen Lord
Post published:July 18, 2016
Post category:IPF Rare Disease

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…

This September Blow Bubbles For IPF

Post author:Kristen Lord
Post published:July 18, 2016
Post category:IPF Rare Disease

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!…

Do Your Doctors Listen Actively?

Post author:Rebekah
Post published:July 18, 2016
Post category:Rare Disease

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…

Only Moments Should Take Your Breath Away – IPF

Post author:Kristen Lord
Post published:July 15, 2016
Post category:IPF Rare Disease

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…

Blooming Despite the Adversity of Illness

Post author:Rebekah
Post published:July 15, 2016
Post category:Rare Disease

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…

Bringing Awareness: Neonatal RDS

Post author:Kristen Lord
Post published:July 14, 2016
Post category:neonatal respiratory distress syndrome Rare Disease

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…

Ready, Set, Accept.

Post author:Rebekah
Post published:July 14, 2016
Post category:Myasthenia Gravis Rare Disease

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…

Bringing Awareness: PNH

Post author:Kristen Lord
Post published:July 13, 2016
Post category:paroxysmal nocturnal hemoglobinuria Rare Disease

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…

The Most Important Thing in Illness

Post author:Rebekah
Post published:July 13, 2016
Post category:Rare Disease

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.

Do You Remember The ALS Ice Bucket Challenge?

Post author:Kristen Lord
Post published:July 12, 2016
Post category:Amyotrophic Lateral Sclerosis Rare Disease

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…

More Rare Than Shakespeare’s Signature? – Fibrinogen Deficiency

Post author:Kristen Lord
Post published:July 12, 2016
Post category:Fibrinogen deficiency Rare Disease

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…

What Keeps You Going Despite Your Disease?

Post author:Rebekah
Post published:July 12, 2016
Post category:Rare Disease

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…

Bringing Awareness: Mycosis Fungoides

Post author:Kristen Lord
Post published:July 11, 2016
Post category:mycosis fungoides Rare Disease

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…

Different, not Lesser, for Being Sick

Post author:Rebekah
Post published:July 11, 2016
Post category:Rare Disease

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…

Bringing Awareness: Glanzmann Thrombasthenia

Post author:Kristen Lord
Post published:July 8, 2016
Post category:Glanzmann thrombasthenia Rare Disease

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…

Success in Breathing Easy

Post author:Rebekah
Post published:July 8, 2016
Post category:Rare Disease

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…

Share Your Story

Meme- Persevere No Matter What

Acquired Hypopro… What?

Meme: Sexy Illness

#BlueUp4PF – IPF Awarenss

Meme: Communication = Goals

Looking For Rainbows?

Meet AH

Do You Know IPF?

Let Your Community Know You Care About IPF!

Breath of Hope for IPF

This September Blow Bubbles For IPF

Do Your Doctors Listen Actively?

Only Moments Should Take Your Breath Away – IPF

Blooming Despite the Adversity of Illness

Bringing Awareness: Neonatal RDS

Ready, Set, Accept.

Bringing Awareness: PNH

The Most Important Thing in Illness

Do You Remember The ALS Ice Bucket Challenge?

More Rare Than Shakespeare’s Signature? – Fibrinogen Deficiency

What Keeps You Going Despite Your Disease?

Bringing Awareness: Mycosis Fungoides

Different, not Lesser, for Being Sick

Bringing Awareness: Glanzmann Thrombasthenia

Success in Breathing Easy

Metastatic Breast Cancer: Navigating Grief

Rethinking What It Means to Live With Acromegaly

The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

Share Your Story

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