As a child, Farrah Fontaine always knew she wasn't normal. Part of her family descends from the ancient Silk Road, which made her stand out in the Great White North. That's why she wants to give voice to the voiceless so they know they're not alone.
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…
When you have an autoimmune disease like Sjogren's and you've heard your doctor tell you for the umpteenth time that you really need to exercise, you kinda just want to…
Everyone wants to know the secret to living longer. The Fountain of Youth. The Elixir of Life. The Philosopher's Stone. Well, researchers may have found the answer and they have…
Here's a riddle to start your day: What do acromegaly, Cushing's disease, and epidermolysis bullosa have in common? If you guessed that they all have treatments owned by a small pharma…
I've found it hard to find blogs and first person accounts of Behcet's disease that aren't just miserable. Maybe it's because I'm really lucky and my disease isn't as bad…
We all know that receiving a rare disease diagnosis brings along a whole wave of emotions. Relief, anger and fear are just a few. It's very common for people to…
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:…
Hey Patient Worthy Community! Did you you know that September is Rheumatic Disease Awareness Month (RDAM for short!)? Well, now you do! Don't feel bad if you didn't know. This…
Most people don't associate the word "fever" with something chronic. They think of it in terms of a flu or passing infection. You've heard the phrase: "Feed a cold. Starve a…
If you don't know what it's like to live with dystonia, then you need to watch this Youtube video by Shawn Fairchild. A brave man living with dystonia, Fairchild shows…
This November, citizens of Montana will have something very important to vote on—besides who will be the leader of our country, of course. So, what exactly are they voting on?…
One of the most frustrating parts of having a rare disease is getting the dang diagnosis in the first place. We've all heard the garbage excuses before: "It's all in…
If you're living with Familial Mediterranean Fever (FMF), you know the headaches (literal and figurative) that come along with it. One of those headaches is finding treatment. Especially a treatment that…
If you have any experience with autoinflammatory diseases, you know that there are a number of things they have in common. Autoinflammatory diseases are: often confused with autoimmune diseases tend to…
Do you live in the United States? Are you an adult? (Meaning, are you older than 18? Whether or not you have your life together does not apply to this…
How many things do people dismiss in daily life as just a sign of getting older? Too many, in my opinion. But in this article, The New York Times seems…
When you have a chronic illness like ankylosing spondylitis (AS), you get used to taking a lot of pills. And I mean A LOT. You take pills for the pain.…
If you're anything like me, you hate taking medicine, but you know that it's important and necessary to do so when you're living with a chronic illness. However, I'm always…
For some people, following a conventional treatment route of medications, procedures, and more medications is the pinnacle of taking care of your health. Why bother eating better when you can just…
Do you ever have those days where you're trying so hard to put one foot in front of the other, and then someone has the balls to ask you why…
When you believe in fairy tales, anything is possible. When you believe in modern medicine, there are some limitations. However, the new use of low-dose naltrexone might seem like a…
It's no secret that a diagnosis of idiopathic pulmonary fibrosis, or IPF, can lead to a lot of STRESS. Of course, what is not good for chronic illnesses like IPF?…
Could slowing the progression of Huntington's Disease (HD) be as simple as using a really bright light? Not quite. That's an oversimplification, but let's break it down. In April, researchers…
Jules Perez-Montiforte was described by her family and friends as the center of the party. Just walking into a room, she would illuminate everyone with a smile. But even though IPF…
So, you got the big ol' BD diagnosis, huh? And now you're trying to figure out how to live with it, right? Same here. See, Behcet's disease (or Behcet's syndrome) is…
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