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…
A lot of us fight Lyme the only ways that are available to us, be it antibiotics, homepathy or other alternative routes. However, when a kid has chronic Lyme, he…
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…
Wow! This is a pretty cool invention to help make life a little easier for people with disabilities. A start-up company called Neurable is working on a technology called BCI,…
Mamá cualquiera entrega el don extraordinario de la Vida Brookwater, Australia. Corinne Heapy, es una dedicada madre de dos hijos, sabe de primera mano, lo que es dar el…
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--…
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…
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…
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…
Dancing is all the rage these days, with shows like Dancing With the Stars bringing in top ratings. People are enrolling more in dance classes, and going to the ballrooms in…
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…
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