Most people have probably heard the saying, “change your thoughts, change your life.” There is great truth to this because how we think can significantly impact our mental and physical…
Have you ever wanted to push your own limits and break out of your comfort zone? If so, you’ll know that it is difficult because getting out of your routine…
I have been living with Cystic Fibrosis (CF) since birth. I was lucky that I was diagnosed early and started on medicine straight away. One in every 25 people carry the…
Have you lost a friend or family member? Do you wonder how you can memorialize or honor their life? This is the dilemma of Kate Shooshan, whose father died of familial…
In the immunodeficiency department, Cat Latuszek hit the unfortunate jackpot. After a lifetime of ear infections, she was finally diagnosed with Common Variable Immune Deficiency, or CVID, at the age…
Ir en su programa de radio promedio sitio web a la salida de la BIOS de sus anfitriones favoritos, poniendo una cara de esos tonos frescos cobardes que escuchas en…
“Healing is a matter of time, but it is sometimes also a matter of opportunity.” – Hippocrates, Greek physician known as “The Father of Modern Medicine” When you’ve been diagnosed…
I recently read an article about a little boy who’d been diagnosed with aplastic anemia, a mysterious and very serious illness that can strike adults as well as children. It’s…
If you were at a cocktail party and someone happened to mention they have Ehlers-Danlos syndrome, how would you respond? Would you deftly swirl the wine in your glass, pretend there's…
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…
There is something inherently unfair about seeing your child get sick, and almost every parent in the world would do anything possible to make things better. It can be even…
When you have a rare disease such as Fabry disease, it’s easy to feel alone. As reported on the National Fabry Disease Foundation’s website, no one really knows how many…
When you were a kid and planning your future, what events did you imagine? Your first car? Your prom? Your graduation? Your wedding? For this boy with Duchenne muscular dystrophy, he…
La vida con una grave enfermedad afecta a más de la salud física; salud mental a menudo sufre, también. Que es una de las razones Anna Barlow tomó nota cuando…
Shelly Mountain has traced her family history and shares how von Willebrand disease (VWD) has impacted six generations very differently since her great-great grandmother's era. Medical treatment was difficult back…
Gaucher disease occurs when the body doesn't produce the enzyme beta-glucocerebrosidase, which is needed to break down fats, or lipids. As a result, fatty deposits collect in the spleen and liver,…
When you get a diagnosis of a rare disease, like Ehler-Danlos Syndrome (EDS), trying to learn about it can be overwhelming. Where do you even start? Do you just start…
If you or someone you love has been diagnosed with cystinosis, chances are you want to do everything you can to learn about it. But the internet can be a…
There is good news for the Castleman disease community: a new drug called SYLVANT (siltuximab) has recently been approved for use by the Food and Drug Administration. If you aren't…
Aplastic anemia is the result of the body's bone marrow not producing enough healthy red cells. This can occur because the bone marrow has been damaged by toxic chemicals, radiation, or…
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…
We’ve written before about the frankly awful Huntington’s disease. The devastating way it strips a person of their motor functions, cognition, and day-to-day quality of life. Treatments remain relatively scarce…
Have you found a comprehensive resource for living with myasthenia gravis (MG)? This is the website you need. From the first click, the Myasthenia Gravis Foundation of America (MGFA) webpage…
"Fate whispers to the Warrior, 'You are not strong enough to withstand the storm.' The Warrior whispers back, 'I am the storm.'" World Rare Disease Day is observed each year…
DaVita Garfield was a young mother with a great job, a strong faith, and was living a happy life when her health began to fail. She had a number of…
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