Rare Chronic Illness Support Group 2nd Friday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Carrie Pope, MSW, LICSW To sign…
Web-based Rare Chronic Illness Support Group 2nd Thursday of each month This is a peer support group for patients living with chronic, rare diseases. Featuring Cara Oppegard, MSW intern To…
Web-based Living Mindfully With Chronic Illness Support Group 2nd Tuesday of each month This is a support group for rare disease patients dealing with chronic illness who are seeking to…
Talking about mental illness is never easy but I wanted to share my experience of it with you. In my case, it came as part of my struggle with Benign…
If you have ever spent time sitting in your doctor’s office with a nurse hovering over you struggling to find a vein in your arm to take blood, you can…
Adapting to a long- term health condition, is not an easy road to be on. There are many phases we go through during our journey from denial to acceptance. It…
Living with a chronic long-term health condition, can have a devastating effect on someone’s life as it affects everything we do. It’s like finding yourself on a new path without…
A New AS Study A recent study, published in Reumatologia aimed to evaluate how ankylosing spondylitis (AS) patients are coping with their condition on a psychological level. They wanted to investigate…
Too often we try to interpret the experiences of others without actually communicating with the very individuals we’re trying to better understand. This leads to false impressions and frequently creates…
If you passed me as a stranger on the street, you would never guess that there was a point in time that I road tripped around the U.S. and picked…
I felt the cold sweat racing down my back. I felt like I was drowning, but there was no water around. By this point in my life, I had experienced…
I was discussing with my sister’s husband a presentation on what to do when diagnosed with a chronic illness. I was going to present this to People with Parkinson’s (PwP),…
As a registered nurse, I have taken care of a fair share of the senior population. I have heard some great stories and also some funny quotes. Several older individuals…
Being married to the love of your life would mean that you know everything there is to know about one another. Physically, emotionally, and mentally. Right? Well, Gene is married…
I love to read a good story about someone overcoming the odds. A young man living with Stargardt disease has done just that this month! He is the first Indian to…
When the pain and muscles contractions from my dystonia were at their worst for me (see above), it significantly limited what I could do. For years I characterized dystonia and…
What comes to mind when you hear "palliative care?" Most people might think it only helps someone with end-of-life care. But did you know that palliative care can actually lift spirits…
Irrelevant, insignificant, ignored, un-empowered, but worst of all INVISIBLE. Let me let you in on a big secret. Those of us who are fighting everyday with the simplest of tasks,…
Al navegar a través de Tumblr o leer tweets, se ha preguntado alguna vez, "¿Qué es un spoonie?" Es el momento de averiguarlo. En primer lugar, un spoonie es…
Those of us with rare diseases like behcet's and fibromyalgia, that cause great pain, can often get frustrated and irritable because we try everything, do everything right, and yet we are still…
It's not selfish to take care of yourself. It's good for you and it's good for your loved ones. It's hard to be there for other people when you haven't…
As a Registered Nurse, I think the main thing that I do is educate people. It can be the actual patient, the caregiver, and/or the family. Nurses spend most of…
I always love to read a heart-warming story. To me there is nothing greater than when family comes together during a hard time. That is exactly what two brothers did.…
New therapies have increased the likelihood of a longer life with cystic fibrosis (CF). A few decades ago, it was not common for children diagnosed with CF to live past…
Most people think of children when they hear cystic fibrosis. Thankfully with new treatments and new therapies people are living much longer. This gentleman, named Gary Anderson, is a perfect example.…
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