Looking For Rainbows?
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,…
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Looking For Rainbows?
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What You Need To Know About MG And Clean Eating
Recently, I wrote a post about the use of complimentary therapies, which are non-medication therapies you can use to help support your body. While things like acupuncture and yoga are…
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What You Need To Know About MG And Clean Eating
Damn, This Kind Woman Makes Us All Look Bad
Casey Noe is living with a rare disease that affects almost every aspect of her life, but she doesn't let it stop her from helping others who also suffer from…
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Damn, This Kind Woman Makes Us All Look Bad
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How to Make a Dysautonomia Connection Count
When you have a rare disease, like dysautonomia, the walls of your world can constrict pretty quickly. Chances are good that you’d never even heard of your disease before your…
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How to Make a Dysautonomia Connection Count
The Fundamentals of Caring – A Netflix Original Featuring DMD
Netflix recently released an original dark comedy that features a young boy from the UK with Duchenne Muscular Dystrophy whose caregiver (played by Paul Rudd) is new at his job and…
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The Fundamentals of Caring – A Netflix Original Featuring DMD
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9 Things People With MG Want to Say But Won’t
When one myasthenia gravis (MG) patient musters the strength to get out of the house, she often receives the same compliment: “You look great today.” But because she feels so…
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9 Things People With MG Want to Say But Won’t
Here’s How Social Media Can Save You From Doctors
If 70 million people are suffering from dysautonomia, why is the medical community so clueless when it comes to diagnosing this disorder? Dysautonomia occurs when the autonomic immune nervous system--…
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Here’s How Social Media Can Save You From Doctors
Who Can Help You Free Your Voice with Parkinson’s?
Parkinson’s disease damages the nervous system, and like other motor system disorders, it affects nearly every facet of life. One of the rarely-discussed symptoms of Parkinson's that can have a…
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Who Can Help You Free Your Voice with Parkinson’s?
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How to Learn More About Hemophilia AND Get Your Disney On
Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…
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How to Learn More About Hemophilia AND Get Your Disney On
Get Out There and Do the Fun Thing for Dysautonomia!
Calling all residents of the Mitten State (also known as Michigan) who live with, or care about, someone suffering from dysautonomia or gastroparesis! Sunday, July 10th is the time to party…
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Get Out There and Do the Fun Thing for Dysautonomia!
Brother of Nine-year-old with Epilepsy Holds ‘Purple Dress Down Day’ Fundraiser
Most people don't think about illnesses or diseases unless they're directly affected. After all, who wants to worry about things that will likely never be a problem? Rare diseases obviously do not get much attention…
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Brother of Nine-year-old with Epilepsy Holds ‘Purple Dress Down Day’ Fundraiser
What Do You Know About Mycosis Fungoides?
Alejandra Carasa arrived in the United States with one suitcase and a thirst for success. Cuban-born Alejandra has been living with T-cell cutaneous lymphoma, also known as mycosis fungoides (MF), since 1999. MF…
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What Do You Know About Mycosis Fungoides?
Rare Mom Steps Up to the Plate and Hits it Out of the Park for GT Research
Julia Smith was diagnosed with Glanzmann thrombasthenia (GT) at the tender young age of six months through a series of fortunate events. First, her mother Helen, noticed her infant bruised very…
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Rare Mom Steps Up to the Plate and Hits it Out of the Park for GT Research
Why Will His First Words Leave You Speechless?
When Gina Walker's son spoke his first words, she broke down and cried. Not that the words, "Hello, Mom," were so revolutionary; she cried because James was 16 and it…
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Why Will His First Words Leave You Speechless?
Happy Independence Day Week! Being Rare in America
There are 30 million people in America with a rare disease. That is about 1 in 10, or 10%, of the population. Keep on fighting the good fight, every post…
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Happy Independence Day Week! Being Rare in America
Extraordinary Destinies For Extraordinary People
"Hardships often prepare ordinary people for an extraordinary destiny." -C.S. Lewis People with rare diseases are not ordinary people. The hardships they endure turn them into extraordinary individuals because they…
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Extraordinary Destinies For Extraordinary People
Fashionista Fesses Up to Ehlers-Danlos
When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her--plus, being short in stature, she saw them as a quick fix to…
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Fashionista Fesses Up to Ehlers-Danlos
Rare is Precious, Unique, and Valuable
If you think about the definition of rare, you realize just how accurately it describes people with rare diseases. You are one in a million and you are precious to…
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Rare is Precious, Unique, and Valuable
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Increased Risk of Depressive Disorders in Ankylosing Spondylitis
People with ankylosing spondylitis (AS) already have a lot on their plates trying to cope with the symptoms of this inflammatory disorder that mainly affects the spine. In severe cases, vertebrae…
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Increased Risk of Depressive Disorders in Ankylosing Spondylitis
Those with Rare Diseases are Not Alone
“She had blue skin, And so did he. He kept it hid And so did she. They searched for blue Their whole life through, Then passed right by- And never…
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Those with Rare Diseases are Not Alone
A Love Story of a Dog, a Girl, and EDS
Sixteen-year-old Sydney Rohmann has a number of rare conditions that have left her in a wheelchair. Among them are Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS). She has even had brain…
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A Love Story of a Dog, a Girl, and EDS
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From Asthma to Incapacitated: The Deadly Disguise of a Rare Disease
Q: When is asthma not just asthma? A: When it's a symptom of Churg-Strauss syndrome. Five and a half years ago, in January 2011, Carole Cordum thought that her asthma was…
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From Asthma to Incapacitated: The Deadly Disguise of a Rare Disease
Source: Photo illustration by Justin Thomas, William & Mary News
Bacterias beneficiosas para la ICV? Sí… Mmmm yogurt!
Píldoras y Parfaits: ¿Cómo probióticos podrían hacer la vida con CVID un poco más fácil. Entre las infecciones lejos demasiado frecuentes asociados con ICV y los problemas gastrointestinales recurrentes, muchos…
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Bacterias beneficiosas para la ICV? Sí… Mmmm yogurt!
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Families Grapple With Rare Lennox-Gastaut
Rachel Ablondi and her husband David knew from the start their infant son Andrew was having trouble meeting common baby-milestones. But their giant wake-up call occurred during a party celebrating…
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Families Grapple With Rare Lennox-Gastaut
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This is NOT The Action These Guys Expected!
I hate the sound of the word “lesion.” I think it ranks right up there with the word “moist” in icky-ness. And I’m willing to guess men with axial spondyloarthritis…
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This is NOT The Action These Guys Expected!
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