I wrote the following poem when I was completely broken due to chronic pain. It is unfathomable to so many doctors that someone in so much pain can sit there…
She stands there with opened eyes Forgotten memories, stolen by time At first she speaks softly, Her words never heard. Then she yells FIRMLY Still not one head turned. She…
¿Se ha sentido perdido en su propio cuerpo alguna vez? ¿Alguna vez ha perdido temporalmente su audiencia debido a la masiva sonando en los oídos? ¿Usted ha tenido el mundo…
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…
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,…
Puedo parecer "bien" para que en el exterior, pero lo que estoy experimentando en el interior no es "fina". Tengo un par de diferentes formas de una enfermedad incurable llamada…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
Have you ever fainted? I have. Three times and all were related to receiving shocking news. The first time was when my grandmother unexpectedly passed away. The second time was…
One day you go from being an active person full of life to waking up not feeling like yourself. You get a bad cold. You never seem to bounce back.…
Looking for a way to celebrate Dysautonomia Awareness month this year? Then you need to check out Dysautonomia International. Why? Because this incredible organization provides wonderful support to the dysautonomia community…
In this article, Dr. Richard Fogoros examines the past and present of dysautonomia while also offering some hope for the future. Among his observations: the condition is far from new,…
Lifestyle adjustments. You know your life will change once you get a disease diagnosis. These changes may be easy or hard depending on how you are currently living life. For…
Dysautonomia is an umbrella term for a number of disorders of the autonomic nervous system (ANS). But to understand the collection of conditions called "dysautonomia," first we have to understand…
Imagine having a student in class that looks... a bit like this on a regular basis. You may have a lot of thoughts about what might be going on. The…
Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…
Welcome to this week's Editor's Choice! Dysautonomia is misunderstood and neglected. This week we have two posts that could help you deal with this condition. We also have a heartwarming…
Pinterest: Home of DIY decorations, hair tips, cake recipes, and POTS treatment suggestions... ...Weren’t expecting that last one, were you? In addition to memes and instructions for upcycling vintage suitcases,…
As much as we want the letters DBHD to stand for “Daily Better Health, Dearie,” those very rare people, whose genetic makeup includes a particular mutation, will translate the acronym more correctly…
Welcome to this week's Editor's Choice! If you're currently in the US, then we know it's hot outside-- but we still wanted you to get out there and raise awareness…
For some cases of dysautonomia, doctors suggest increasing the salt intake in your diet. Doing so may help raise your blood pressure to alleviate light headedness, and improve fatigue level…
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…
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--…
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…
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…
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…
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