When you live with a life-changing disease like myasthenia gravis, or MG, it’s normal to feel down or have difficulty adjusting to the loss of control. For many, it’s easy…
If you had the opportunity to gaze into a crystal ball and see the future, would you do it? And if you did, and you noticed something amiss, would you…
When you have a rare disease like ankylosing spondylitis (AS), one of the most annoying things your doctor can say to you is: "Well, you need to exercise more." Why…
I know it’s perverse, but the second thing that popped into my head when I read about iron-based proteins and ALS, was a toy I loved as a kid. There…
Oye, ¿te gustaría ser capaz de usar pantalones cortos en cualquier momento que desee, incluso en pleno invierno? Suena bien, ¿verdad? ¿Qué hay de poder comer tanta sal como desee,…
¿Qué es la sarcoidosis? ¿Has oído hablar de él? Es una enfermedad inflamatoria que se caracteriza por granulomas, o en términos simples, una colección de células inmunes que se depositan…
Todo el mundo ama un poco de misterio, excepto cuando se trata de tipos de mal agüero de enfermedades autoinmunes. En un artículo de Rare Connect, un sitio web que…
Sometimes it feels like nothing is going your way. Though it can be difficult, try to find the positive. Silver linings can make a world of difference.
Happy December Friends! Ah, the week after Thanksgiving is always easy for me knowing Christmas is just a few weeks away! This week, we have a story about a doctor with…
I just watched a YouTube video, posted by a sweet red-headed, freckly-faced teenager, who is living with neuromyelitis optica (NMO). NMO is a rare autoimmune, demyelinating disease that attacks people…
Multiple system atrophy (MSA), formerly known as Shy-Drager Syndrome, while rare, presents many different challenges, the first of which is finding a doctor who recognizes the symptoms. This can be…
Some disease processes shout at you- dramatic symptoms bring you immediately to medical care and treatment. However other unhealthy biological processes are more subtle and are likely to go undetected…
Isn't it it ironic that the rarest things in the world can also be the most severe? Acromegaly, for example. When she was only 23, Jillian was diagnosed with a…
Como alguien que está luchando con una enfermedad crónica, es probable que no es ajeno a los problemas estomacales que vienen junto con el tratamiento o simplemente una realidad de…
Tomorrow is another day. New beginnings and new opportunities are right around the corner and bad days don't last forever. Keep your chin up!
Dear Exhausted Mom Living with Primary Immunodeficiency Disease (PI), I know how you feel. You are tired. Our worlds may feel and look similar, but I’m not living with primary…
I once heard that the difference between a good performance and a stellar one is transcendence—going beyond what’s written in the script or a song sheet. And, in my personal…
I am digging the Guthy-Jackson Charitable Foundation! When their teenage daughter was diagnosed with neuromyelitis optica (NMO), which is a rare, demyelinating, autoimmune disease that can be life-threatening, parents Victoria…
This community has come together in a big way to support a local family. Eric Frisbee and his wife, Julie, have two daughters that are living with cystic fibrosis. They…
If you don't believe in the power of people who live with chronic diseases like PBC, you need to meet my friend and inspiring colleague, Linie Moore! In 1995, doctors…
This is always something good to keep in mind, but especially around the holidays! Spoonies often are dealing with fatigue and pain. Don't feel like you need to do so…
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