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…
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…
A support system, a family member, a significant other, a friend, can mean so much and knowing that there others out there who are going through the same thing, however…
There's no doubt that living with a chronic illness is difficult. There may be certain things you can't do and activities you can enjoy. Even so, if you let that…
Unfortunately, there will always be bad days. The thing is, you are allowed to feel miserable sometimes. Everyone does. The important thing is that you pick yourself back up, sometimes…
When the going gets tough, think about how good it will feel once your past the rough patch. You should be proud of yourself and your resilience and how far…
Everyone has bad days, but don't think for a second that you can't handle this. The chronic life is rough but you're stronger than you know!
Take Snoopy's advice, as hard as it may be sometimes, keep looking up. A little hope and positivity can go a long way!
Pictured: Dr. Jakub Tolar EB can make a lot of daily activities difficult and painful. Check out some tips and tricks compiled from presentations at the 2016 Debra CARE Conference.…
This goes for peers and physicians alike, chances are if you are uncertain about some aspect of an illness the patients themselves can fill you in. Patients do so much…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page then…
No doubt there's strength in numbers. Maybe your family friends offer unending support that boosts you when you're low. Maybe you participate in a local support group or are part…
Broken crayons still color an regardless of whatever part of your body is not cooperating with you, you are not any less beautiful, purposeful, and important. The colors of your…
The Dystrophic Epidermolysis Bullosa Research Association of America (Debra) describes EB as "The Worst Disease You've Never Heard Of". It's a painful disease without a cure and it's rarity makes…
Surprises often aren't welcome when it comes to your health. Working with your healthcare team to develop reasonable expectations and general timeline can be comforting to many. Do you create…
This quote is by Patient Worthy Contributor Lisa D. check out some of her articles to learn more about her story: Meet Lisa D. The Best Thing You Can Do…
Kids with rare diseases will often be dealing with doctors for their entire lives and helping them find their voice along the way is important. Letting your child speak to…
Bravery is something rare disease patients know a lot about. They may be scared before a procedure, and understandably so, but more than likely they've done their research and they're…
Family members can offer emotional and moral support during trying appointments but they can also be your back-up. If you have a lapse in memory or aren't sure how to…
Being compassionate and willing to lend a hand can make someone else's day but also impact your own. Even in illness, when many tasks aren't plausible, there is often a…
Don't you hate when you remember a question you wanted to ask after you've already left? Arguably the most important questions are towards the end of appointments, when you're receiving…
Chiasma is conducting another clinical trial for Acromegaly patients, the MPOWERED study. “It is designed to compare the safety and effectiveness of an investigational new drug product, octreotide capsules, to…
Take things one day at a time. Know that the going isn't always easy and the path isn't always smooth. Your journey with your health is exactly that, a journey,…
Illness isn't always pretty even when it's "invisible". What your peers might not see, your family and significant other probably has a little more insight to. In sickness and in…
Communication is key, and it's extra-important for patients with rare diseases. Be sure to communicate with your doctors; how you're feeling and what you want to know. Communicate with your…
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