Are you a person living with trigeminal neuralgia (TN)? Are you aware of the Facial Pain Association (FPA)? Well, you should be. This organization is incredible!! Focused on people with TN, this…
In the midst of an ugly American presidential post-election, I am actively looking for inspiration to distract me from this mess. And man, was I lucky! There’s a gal who’s living…
Although people living with familial hypercholesterolemia (FH) continue to work for increased awareness about this disease, it is an exciting time for those who are living with it. According to…
Mahatma Gandhi taught that we should endeavor to be the change that we wish to see in the world. (I believe Gandhi may have been on to something). I'm wondering…
We all need to be able to turn to family and friends when we've got a problem. There is a strong link between the support we receive and our well-being. It…
Need to do some Christmas or Holiday shopping? Today, PW Contributor and super mom with MS Angie Randall is hosting an event, in-store at Athleta in Chicago, IL AND online.…
Baby Isabella (pictured above) is in serious need of a hospital transfer. Her condition Gastroschisis, is rare. She needs a facility with people who have the most experience caring for…
I used to work with a woman who had a houseful of kids, so she always had an interesting story to tell. One story that stands out to me is…
How many of us are guilty of spending countless hours just scrolling through Facebook? I know I'm guilty of that. Just checking out pictures and watching videos. It's great to see…
Lately, I haven’t been particularly mindful of hope. In truth, sometimes I feel like it’s more suited to children’s fairy tales. But the more I’ve turned the issue around in…
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…
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…
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…
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…
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…
Few conditions are as widely misunderstood as Tourette Syndrome, and sadly, even fewer are so readily targeted for cheap laughs and rude humor. The reality of living with Tourette’s is…
When you have a rare disease like complex regional pain syndrome (CRPS), sometimes it seems like doctors don't know anything about it. What's worse, it seems like a lot of…
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