Antes de que me diagnosticaran oficialmente con el síndrome de taquicardia postural ortostática (POTS, por sus siglas en ingles), pensaba que los síntomas extraños eran una parte de mí ser.…
One Thursday night, I was completely emotionally wiped out. There was something that went down in my family and I spent that evening on the phone and in tears. I’m…
10 cosas que he aprendido viviendo con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven yo tenía planes y listas para toda mi…
How celiac disease, vestibular neuritis, and cervical dystonia have ruined my answer to the most common way to greet people in America. “Hello, how are you?” Is it okay to say…
Dear Body, I thought it was past time for me to write this letter to you. You see, I owe you an apology. I spend most days considering how you've…
Dear Immune System, I'm onto you. You're not fooling anyone. In fact, you aren't even being the least bit subtle. I know what you're doing. You're tired of the fight.…
Con el nuevo año se acerca he estado pensando en maneras que puedo estar más involucrado con mi salud. No es el peso y el ejercicio sin sentido perder norma…
Pastel de calabaza, galletas de jengibre, pan, bastones de caramelo, y chocolates. ¡Oh, qué dulce estación! Hace mis hijos unas cuantas noches y yo pasamos un par de horas agazapados…
Estimada Jessica, Te miro y veo determinación. Las cosas son tan difíciles para usted ahora, corriendo de un hospital a otro. Yo sé que usted nunca imaginó que su vida…
A la edad de 31 Andrea habían sido diagnosticados con espondilitis anquilosante (AS), la colitis, la escoliosis, cifosis, y la osteoporosis ya pesar de que estas condiciones han hecho su…
Here at Patient Worthy, we can't stress enough how important it is for patients to advocate for themselves. With rare disease, you often have to fight for a diagnosis. But…
Nancy is a breast cancer patient and these are five lessons she's learned throughout her treatment, applicable to anyone who has faced the adversity of being a patient: Attitude of gratitude.…
Life would probably be easier for three-year-old Kayden Bell if doctors could determine a diagnosis for him. So far, he's been diagnosed with microcephaly, global developmental delay, hypomyelination and dystonia with…
To read Part 1 of Mari's #NewYearNewYou post, click here. Now, let's focus on the New Year shall we. What do I want for 2016? That's a loaded question! But, I'll…
So here we are. A new year. 2016: A year for new hope and new potential. I've seen so many friends and family make these "New Year, New Me” New…
Alexis Rosen was diagnosed with chronic Lyme disease after much confusion and months of searching for answers. She has since begun IV antibiotic therapy. After (finally) being diagnosed and deciding on a treatment…
New Year, New Attitude. All of us that have chronic illnesses have said it at some point when that clock counts down to the new year. “This year I will…
To read part 1 of Laurie's #NewYearNewYou goals, click here. I recently became a state chapter leader for the Dysautonomia Support Network. I love it and it's really helped me…
With the new year approaching I've been thinking of ways that I can be more involved with my health. Not the standard lose weight and exercise nonsense like most people…
To catch up on Alexis' Lyme disease journey, check out Part 1 of her story here. "In my line of work, when evaluating a case for a newly placed foster…
A chronic Lyme disease diagnosis will change your life. But sometimes, the biggest battle is just getting the diagnosis in the first place. In part one of PW Contributor Alexis…
I’ve been using internet dating sites for the past eleven years. I have also been dealing with a rare and undiagnosed disease for the past five and a half years.…
For Part 1 of Laurie's Life with Dysautonomia, click here. For anyone who is still doubting Dysautonomia and POTS, I've come up with what I call the Dysautonomia Party Trick Challenge.…
I am thankful that I have been able to embrace the fight I have against the crippling disease of ankylosing spondylitis (AS) and I am thankful that in the process,…
For many like myself, the holidays can be bittersweet, and sometimes hard. Everyday, I am thankful for the people who are a part of my life. Sometimes though, I cannot…
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