I am beyond excited to report I have begun the process of recovery from late stage, chronic Lyme disease. A year ago, I was reading through articles, clicking on everything…
El martes 15 de septiembre varios miembros del equipo digno de pacientes asistían al Taller Científico Anual de las Enfermedades Raras organizado por la Fundación EveryLife de Enfermedades Raras. El…
Welcome Back Patient Worthians! Acromegaly patients will be interested to see some new research happening in the name of rare disease. Speaking of research, there is a Castleman's event coming up…
El Consejo Nacional de Salud y la Alianza Genética están afirmando la necesidad de una mayor participación de los pacientes y la incorporación de las perspectivas de los pacientes…
ATTENTION all of you go-getters and Sherlock Holmes peeps! I’m calling on my investigative peeps for some support! Here’s a challenge for ya to help the Cushing’s disease (and Cushing’s…
Call me crazy, but I’m pretty sure September was trying to kill me. The whirlwind romance with summer is over. All the front displays of the supercenters showcase the brilliantly…
Happy Fall Friday Patient Worthians! This week we have the amazing story about a woman with dystonia. We also have a video review of a man diagnosed with CVID. Additionally,…
I want to see my kids grow up. I just want to see them a happy, that’s all. I think that goes with just about any parent; they just wanna…
I am THAT mom. I don’t like or take medicine unless it’s my last resort. And the same goes for giving it to my children. To a fault, I follow…
Al igual que romper con tu pareja puede ser difícil de hacer, por lo que se puede romper con su médico. Después de todo, él o ella puede haber estado…
Happy Friday Patient Worthians! We have two intriguing stories from PW contributors this week, detailing their plight with rare disease. Additionally, we have a pretty cool outcome for a pretty cool kid…
Two years ago, my phone rang in the middle of the night and our journey with heterozygous familial hypercholesterolemia, or HeFH, began. My immediate thought was I'd won the Publisher's Clearinghouse Sweepstakes…
This is outstanding: However, be prepared because what I am about to say may not be popular, but it's my truth. It breaks my heart that adults with rare disease…
When I was first diagnosed with Behcet's disease, I did a TON of research. And not just any old WebMD research either. I went to the big names, the legit sources:…
Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets! What do pharmaceutical companies mean…
Being a caregiver is among the most important jobs a person can take on, but it comes with its own set of perils: isolation depression sleep deprivation So, if you…
There [are] treatment[s] for symptoms for dystonia. For neuropathy they can give you things like anti-depressants which have been known to curb neuropathy. They can do botox injections into the muscles…
Welcome back Patient Worthians! Are you looking forward to 2017? Well you should be if you have HAE! Ever heard of Botox? If you have, you probably think of Hollywood…
The process to get diagnosed was a very long one. It was over two years that I first started seeing a neurologist regarding the concerns and issues that I was…
Press release: 6th September 2016 Raise awareness about your cystic fibrosis issues on Worldwide CF Day Since 2013 many countries have marked Worldwide CF Day on the 8th September. As this…
I discovered this neurologist, my current neurologist, through an occupational therapist who was trying to help me learn to live with whatever condition I had at the time, because I…
Happy Labor Day Weekend Patient Worthians! We hope you can spend this weekend's extra time with friends and family while gearing up for fall! This week we have a post…
Like a lot of overweight young adults, I struggled with weight for pretty much my whole life. My mom always tried to get me to eat better and I pretty…
My name is Nolan,and I'm from Virginia Beach, Virginia. At this time the dystonia will effect just about anything that I do, but my one true passion is running. I…
Breastfeeding is a pretty loaded topic in the world of moms. There’s a certain pressure to breastfeed since research suggests it’s better for your baby and what mom doesn’t want…
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