June 2015 – Patient Worthy

How much do you know about blood and donating it?

Post author:Patient Worthy Contributor
Post published:June 30, 2015
Post category:Rare Disease

[slickquiz id=1]

Once an Afterthought, Orphan Drugs Own Spotlight

Post author:Patient Worthy Contributor
Post published:June 30, 2015
Post category:Rare Disease

In the world today, there are 30 million Americans affected by 7,000 different forms of rare diseases, all in need of treatment. But because the diseases are so rare, treatment for them…

How to save a life: Donate Blood!

Post author:Patient Worthy Contributor
Post published:June 30, 2015
Post category:CVID Rare Disease

Ordinary Mom Delivers Extraordinary Gift of Life BROOKWATER, Australia. Corinne Heapy, a devoted mother of two, knows firsthand, what it’s like to give the gift of life. She’s heroically…

Erin shown during one of her IV treatments. Source:CNN

Triumphant CVID Survivor Puts the “L” & “E” in IV

Post author:Patient Worthy Contributor
Post published:June 29, 2015
Post category:CVID Rare Disease

Erin can't recall a time in her life when she wasn't sick. Since the age of four, she has had an endless succession of infections, sinusitis, bronchitis, urinary tract infections,…

Would You Volunteer to Break Your Legs? This Kid Did!

Post author:Patient Worthy Contributor
Post published:June 29, 2015
Post category:Cystinosis Rare Disease

You know those commercials, "What would you do for a Klondike bar?" Think about that, but instead of getting ice cream you get to play baseball. What would you do? Highschooler…

Learn How to Defy the Odds from this Cystonosis Mother

Post author:Patient Worthy Contributor
Post published:June 29, 2015
Post category:Cystinosis Rare Disease

Tahnie was 16 months old when she was diagnosed with the rare disease cystinosis. Her parents were told she would most likely not live past the age of 10. During…

How to be 100% Devoted Through Sickness and Health

Post author:Patient Worthy Contributor
Post published:June 29, 2015
Post category:CVID Rare Disease

Julia Domenick has spent nearly five years caring for her husband Andrew "Drew" after he suddenly became ill. "Drew just had his 50th birthday in rehab! We never thought that he…

Meet TZ the IDF Zebra! #namethezebra

Post author:Patient Worthy Contributor
Post published:June 26, 2015
Post category:CGD CVID Primary Immunodeficiencies Rare Disease

Meet TZ the IDF Zebra! We told you this year’s conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra…

Source: Screenshot from IDF "Reel Stories"

Feeling alone living with a PI? Here are 82 people like you!

Post author:Patient Worthy Contributor
Post published:June 26, 2015
Post category:CGD CVID Primary Immunodeficiencies Rare Disease

We told you why this year's conference was going to be extra exciting in our earlier post, 2 Reasons Why the 2015 IDF National Conference is Extra Exciting. Find out…

7 Crazy Plays to Cheer the Return of MLB’er with AS

Post author:Patient Worthy Contributor
Post published:June 25, 2015
Post category:Ankylosing Spondylitis Rare Disease

Franklin Gutierrez is back! After dealing with the long road of recovery from his Ankylosing Spondylitis diagnosis, which we detailed here, Gutierrez made his first MLB start June 24th, 2015…

2 Reasons Why the 2015 IDF National Conference is Extra Exciting

Post author:Patient Worthy Contributor
Post published:June 24, 2015
Post category:CGD CVID Primary Immunodeficiencies Rare Disease

The IDF's 2015 National Conference is quickly approaching! For 3 days, Louisiana will welcome the IDF and all of its constituents and supporters. From Thursday, June 25th- Saturday 27th, the IDF…

5 #Relatable Comics for Rare Disease Patients

Post author:Rebekah
Post published:June 24, 2015
Post category:Rare Disease

1. Rare diseases tend to come with long, difficult names. For the many people who are unfamiliar with them, they can be a mouthful and you may have to repeat…

You Call the “Shots”—vaccinations with an immunodeficiency?

Post author:Patient Worthy Contributor
Post published:June 24, 2015
Post category:CVID Primary Immunodeficiencies Rare Disease

Your health is important—really important—so naturally, you want to make the best decisions for your body. However, at times, that gets tricky, especially if you have a compromised…

When Life Hands You Lemons, and 2 Rare Diseases

Post author:Patient Worthy Contributor
Post published:June 23, 2015
Post category:CVID Rare Disease

Primary Immune Deficiency and Dysautonomia - Living With a Rare Disease Ilana Jacqueline looks like a perfectly healthy young woman, but looks can be deceiving. It took 19 years before…

Learn To Be Brave From This Inspiring HAE Millennial

Post author:Rebekah
Post published:June 18, 2015
Post category:HAE Rare Disease

Amanda struggled for years to understand the pain and swelling that she kept experiencing. Her doctors couldn't figure out was wrong and she never knew why her throat would sometimes…

Why do Pharma Companies Care About Rare Diseases?

Post author:Patient Worthy Contributor
Post published:June 17, 2015
Post category:HAE Rare Disease

Why Pharma cares more and more about Rare Diseases Congress. The FDA. Patient Advocates. And Venture Philanthropy. When it comes to rare diseases, medicines haven't always been readily available. A…

Living with 2 Rare Diseases, this Blogger is a Champion

Post author:Patient Worthy Contributor
Post published:June 17, 2015
Post category:CVID Rare Disease

Meet Yoni Masel- RareDisease Patient, Advocate, Activist & Blogger His goal: To raise awareness for rare diseases, and to help others by educating and sharing #PatientWorthy information. Yoni Maisel (Yonatan Maisel)…

5 Ways To Improve Your A.S. Experience

Post author:Rebekah
Post published:June 17, 2015
Post category:Ankylosing Spondylitis Rare Disease

You can lead a healthier lifestyle and help decrease some of your A.S. symptoms and frequency of flare ups by following these steps. 1. Exercise [iframe src="http://giphy.com/embed/NnwBN2NdkVx5K" width="500" height="237" frameBorder="0"…

A 7-Layered “How To” on Managing Your Life with CVID

Post author:Patient Worthy Contributor
Post published:June 17, 2015
Post category:CVID Rare Disease

Upon getting a diagnosis of a chronic illness, like CVID, or Common Variable Immune Deficiency, it's easy to get overwhelmed. Bogged down by questions in your head--What do I do…

A.S.-Rare and Tricky to Diagnose

Post author:Patient Worthy Contributor
Post published:June 17, 2015
Post category:Ankylosing Spondylitis Rare Disease

Over time, you may have noticed that you have neck pain, and that you’re stiffer in the morning than you are by the afternoon. The most common symptom of ankylosing…

5 “Patient Worthy” Instagram Users to check out #CVID

Post author:Patient Worthy Contributor
Post published:June 16, 2015
Post category:CVID Rare Disease

Living with CVID? Learning to manage? PatientWorthy is looking for you on Instagram if you are living with Common Variable Immunodeficiency Disease, CVID. #PatientWorthy to share your photos with us! And…

What hurts worse than a fastball to the ribs? An A.S. Diagnosis

Post author:Patient Worthy Contributor
Post published:June 16, 2015
Post category:Ankylosing Spondylitis Rare Disease

Living the dream as a future baseball All Star, Franklin Gutiérrez, a.k.a. "Guti" was on top of the world. In 2000 the Cleveland Indians signed amateur free agent Franklin Gutiérrez,…

5 Things to Do to Prepare Your HAE Child For School

Post author:Rebekah
Post published:June 16, 2015
Post category:HAE Rare Disease

Sudden HAE attacks can result in hospitalization or a few days in bed at home; forcing many patients to miss work or school.A study was conducted in Germany, Denmark, and…

Siblings Share Life-Threatening Mystery Disorder- What was it?

Post author:Patient Worthy Contributor
Post published:June 16, 2015
Post category:CVID Rare Disease

Her Brother Said The Diagnosis Was Impossible; She Wasn't So Sure In February of 2006, Sheryl Stein of Arlington, Virginia, knew something was wrong. She was suffering from nosebleeds and…

HAE Triggers: Can you Avoid Them?

Post author:Patient Worthy Contributor
Post published:June 16, 2015
Post category:HAE Rare Disease

Many people with hereditary angioedema (HAE) will tell you that really aren't sure what causes their attacks, but they can identify some common triggers such as stress, anxiety, minor trauma…

Get Involved

How much do you know about blood and donating it?

Once an Afterthought, Orphan Drugs Own Spotlight

How to save a life: Donate Blood!

Triumphant CVID Survivor Puts the “L” & “E” in IV

Would You Volunteer to Break Your Legs? This Kid Did!

Learn How to Defy the Odds from this Cystonosis Mother

How to be 100% Devoted Through Sickness and Health

Meet TZ the IDF Zebra! #namethezebra

Feeling alone living with a PI? Here are 82 people like you!

7 Crazy Plays to Cheer the Return of MLB’er with AS

2 Reasons Why the 2015 IDF National Conference is Extra Exciting

5 #Relatable Comics for Rare Disease Patients

You Call the “Shots”—vaccinations with an immunodeficiency?

When Life Hands You Lemons, and 2 Rare Diseases

Learn To Be Brave From This Inspiring HAE Millennial

Why do Pharma Companies Care About Rare Diseases?

Living with 2 Rare Diseases, this Blogger is a Champion

5 Ways To Improve Your A.S. Experience

A 7-Layered “How To” on Managing Your Life with CVID

A.S.-Rare and Tricky to Diagnose

5 “Patient Worthy” Instagram Users to check out #CVID

What hurts worse than a fastball to the ribs? An A.S. Diagnosis

5 Things to Do to Prepare Your HAE Child For School

Siblings Share Life-Threatening Mystery Disorder- What was it?

HAE Triggers: Can you Avoid Them?

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

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