Disillusioned by Dysautonomia
Recently, my boyfriend and I were looking at places to go on vacation before he gets deployed. He wants to travel internationally because this is his last chance for a…
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Disillusioned by Dysautonomia
Looking Back: This Mom’s Video Could Make CVID Awareness Go Viral
We want to celebrate our patient contributors and writers for their efforts in helping the rare community, bringing awareness, understanding and compassion to often neglected disease. The following article was originally…
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Looking Back: This Mom’s Video Could Make CVID Awareness Go Viral
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Will You Be THE ONE To Save This Woman’s Life?
With all the political hocus-pocus that's enveloped the United States over the past year, I'm starting to get "petition burn-out," "marcher's burn-out," and just a general "call-to-action burn-out." This is…
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Will You Be THE ONE To Save This Woman’s Life?
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Morquio Syndrome: How One Inspirational Man Refused to Take “No” for an Answer
I have a new hero, an Irishman who’s not only gotten some great press and notoriety, this guy has struck gold in the hearts of the Morquio syndrome community! In…
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Morquio Syndrome: How One Inspirational Man Refused to Take “No” for an Answer
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Hey, Buddy, Can You Spare a Joke for AS?
A story I read about a man with ankylosing spondylitis (AS) brought back a great memory for me. A few years ago, I was spending a lonely New Year's Eve…
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Hey, Buddy, Can You Spare a Joke for AS?
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Big Changes for DMD Community: Innovative Research and Beer
If you’re like most people (especially me), you’ve never heard of nicotinamide riboside (NR) before. But that may change very soon, especially for the Duchenne muscular dystrophy (DMD) community. What…
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Big Changes for DMD Community: Innovative Research and Beer
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Did You Know?! Primary Immunodeficiency Does NOT Have to Suck
Since a young age, many of us have searched for something—a hobby, a passion, a quirk—that "defines” us. Much like the pursuits of Angela Van Batavia, a middle school teacher,…
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Did You Know?! Primary Immunodeficiency Does NOT Have to Suck
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Why MPS VI Will Make You Adapt a Positive Attitude
Life is a reflection of our attitude, and we can learn a thing or two from Alena Galan, a young woman who’s living the dream as a college freshman, hosting…
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Why MPS VI Will Make You Adapt a Positive Attitude
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This Valentine’s Day You Can Give More Than Just Roses
When I was 15 and received my learner's permit, they asked if I'd like to be an organ donor. I was a little freaked out at the image of getting…
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This Valentine’s Day You Can Give More Than Just Roses
Alveolar Capillary Dysplasia Almost Cost This Baby Her Life
Alveolar capillary dysplasia, or ACD, is an exceptionally rare disease that seldom has a positive outcome. It begins in the womb when the alveoli capillaries in baby's lungs don't properly…
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Alveolar Capillary Dysplasia Almost Cost This Baby Her Life
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Treatment for HoFH Can Help Patients Live Longer, Healthier Lives
I just had my yearly physical and something weird (for me) popped up in the blood tests. My cholesterol level was up. Not through the roof, but enough to raise…
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Treatment for HoFH Can Help Patients Live Longer, Healthier Lives
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PHAT with Cushing’s Disease – This Woman Knows How to Rock It!
I’ve been fat before, but when I was back in 2007, I never felt PHAT—as in “pretty hot and tempting.” So when I read the post about a fabulous, young…
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PHAT with Cushing’s Disease – This Woman Knows How to Rock It!
Looking Back: Allen’s Story Part 2- A Soldier’s Last Hope
We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…
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Looking Back: Allen’s Story Part 2- A Soldier’s Last Hope
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4 Reasons My Mastiff Would Fail as a Mastocytosis Service Dog
If you're a dog owner, you probably already know just how awesome dogs are. They fill your life with love, loyalty, fur, and plenty to smile about. For one little…
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4 Reasons My Mastiff Would Fail as a Mastocytosis Service Dog
Editor’s Choice: When MG Attacks, Learn How to Fight
Happy Friday Patient Worthians! What happens when big pharma combines forces? Also, what are you doing in March? We have a conference for you! What are the complications of having multiple…
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Editor’s Choice: When MG Attacks, Learn How to Fight
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In Northwest Ohio or Michigan? Sjögren’s Support Group Meeting Next Week!
Attention! A Sjögren’s Support Group will be meeting in Ohio. This meeting will take place February 12th from 12:00 pm-2:00 pm at Flower Hospital in the Conference Center Building, 5200 Harroun Road,…
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In Northwest Ohio or Michigan? Sjögren’s Support Group Meeting Next Week!
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Parents: Get an SMA Early Check for Your Newborn!
Genetic testing for Spinal Muscular Atrophy (SMA). Most US-born newborns are undergo testing to find out if they have certain genetic conditions. These tests vary from state to state. There…
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Parents: Get an SMA Early Check for Your Newborn!
Ohio Twin with CF to Recieve Scholarship This Super Bowl Sunday
Update: In June of 2016, we had the pleasure of interviewing Aleeya Young, an amazing teen with CF. Well, this Sunday she will be receiving a $10,000 2016- 2017 Sacks for CF…
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Ohio Twin with CF to Recieve Scholarship This Super Bowl Sunday
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Cushing’s Disease: Finding Inspiration Works Wonders
In sharp contrast to my other two posts recently about the power of humor in living with Cushing’s disease, my heart goes out to another woman, a mom who’s had…
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Cushing’s Disease: Finding Inspiration Works Wonders
[Source: By Bobjgalindo (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC BY-SA 4.0-3.0-2.5-2.0-1.0 (http://creativecommons.org/licenses/by-sa/4.0-3.0-2.5-2.0-1.0)], via Wikimedia Commons]
Primary Sclerosing Cholangitis Can Do a Number on Your Liver
Primary sclerosing cholangitis, or PSC, is a chronic progressive disease that damages the bile ducts. And, if you didn't know, bile is a liquid that assists the body in the…
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Primary Sclerosing Cholangitis Can Do a Number on Your Liver
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Gaucher Disease: 21st Century People Share Their Experiences
What if you were born with an enzyme efficiency that prevented your body from breaking down lipids? Then you are probably one in 50,000 people who has Gaucher disease. And…
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Gaucher Disease: 21st Century People Share Their Experiences
PW colaborador con la miastenia gravis es # 4 en Kindle
Patient Worthy quiere felicitar a Lisa D.! Felicidades por lograr la posicion #4 en Amazon Kindle y una calificación de 5 estrellas. Su libro es también # 1 en tres categorías con…
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PW colaborador con la miastenia gravis es # 4 en Kindle
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How to Be Popular in the GN World
It is more blessed to give than to receive, and one man who lives with glomerulonephritis (GN) knows all too well how helping people and doing a good deed out…
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How to Be Popular in the GN World
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This Man is Proof: You Can Live with Cystic Fibrosis in the Golden Years
Most people think of children when they hear cystic fibrosis. Thankfully with new treatments and new therapies people are living much longer. This gentleman, named Gary Anderson, is a perfect example.…
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This Man is Proof: You Can Live with Cystic Fibrosis in the Golden Years
Fred and me. Fred helped diagnose me with dystonia many years ago before anyone else knew what it was and I was still doctor shopping. He has dystonia also.
Self-Empowerment Tips for Healthy Living
When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition…
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Self-Empowerment Tips for Healthy Living
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