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…
En el mundo de hoy, hay 30 millones de estadounidenses afectados por 7.000 formas diferentes de enfermedades raras, todos con necesidad de tratamiento. Pero debido a que las enfermedades son…
Welcome to this week's Editor's Choice Patient Worthians! This week, we want to spread some info on what it feels like to actually live with rare disease. Not just about…
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…
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…
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…
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…
Some people diagnosed with Parkinson’s disease or symptoms of dystonia may feel like they’re living in world that’s rapidly shrinking. As their shaking, tremors, and involuntary muscle contractions increase over…
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…
So I do not think doctors actually say that Fibrinogen Defiency and Glanzmann Thrombasthenia are medically or scientifically cousins, but when I was reading about them I realized that they are…
I read an article about a woman in China who chose to end her life so that her son, who suffers from ankylosing spondylitis (AS), could receive an insurance payout…
Emotional support, someone telling you that they're there for you and that things will be OK, shouldn't be underestimated. It's important to have someone to lean on when the going…
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…
By 2013, 17 states plus the territory of Washington, DC legalized or formed legislation around medical marijuana. A study by the University of Georgia suggests that this change caused about a…
Lisa Marie Basile se da cuenta de que la vida con una enfermedad auto-inmune es frustrante. También tuvo un tiempo difícil conseguiendo un diagnóstico porque, como ella dice, "... muchos…
If you’re a fan of country music, you might recognize Joe Nichols’ name because of chart-busting hits like, “Gimmie That Girl,” “Sunny and 75,” and “Freaks Like Me." But Nichols…
Just getting an accurate diagnosis can be a tremendous challenge for people living with the connective tissue disorders that fall under the Ehlers-Danlos Syndrome umbrella. Common misdiagnoses include fibromyalgia, arthritis,…
You've got more inner strength than you realize! we all will sometime feel run-down, or scared, or hopeless, especially if living with a chronic illness. you have handled everything that's…
Having a rare disease like Addison’s is enough of a challenge for most people. Addison’s disease is a disorder of the adrenal glands which causes extreme fatigue. Now, imagine having…
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…
Chris Ormerod, 55, is a former goalkeeper for the Padiham Football Club (which, if you live in the United States is the game we call "soccer"). He suffers from Churg-Strauss syndrome, a…
En serio, ¿quién no ama las listas? Y listas sobre cómo gestionar mejor la espondilitis anquilosante? Aun mejor. Así que por suerte para nosotros, Everyday Health presenta toneladas de listas…
We are lucky enough to live in a country where it is our right to pursue our happiness. Lately though, everyone seems so unhappy and easily offended. It seems like…
Melissa Nearman was a student with big plans and a great work ethic, with her feet firmly planted on the path to achieving her dreams. After many appointments and tests, doctors…
The Northampton Chronicle reports a two-year fundraising effort by the Herbert family in Northampton, UK, has reached fruition, and they are now able to provide their son, Lewis, who is…
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