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Open enrollment for health insurance begins again on November 1st and millions of Americans have signed up to make sure they are in the loop about important coverage deadlines, as well as newly available prices and plans in 2016. As we move into the third year of the Affordable Care Act (ACA), AA&MDSIF wants to highlight a few of the issues that patients with rare diseases should be aware of:
My professional career for thirty years was with Colonial Williamsburg. I led children, adults, and even a king and queen on tours to explore our colonial history. I retired and shortly after turning 66, I was diagnosed with rheumatoid arthritis and treated with methotrexate.
After graduating college, most young people are ready to take a break, go to the beach or maybe on a trip to Europe before getting serious again. Not two-time Matthew Debono Scholarship recipient Derek Cope. Derek embarked on a three-week study-abroad trip in June to Tanzania, where he visited hospitals, schools and orphanages to learn how health is delivered in Africa.
We have highlighted some clinical trials currently recruiting patients. Each has a specific purpose related to aplastic anemia, MDS, or PNH. These clinical trials (also known as research studies) were obtained from www.clinicaltrials.gov, the federal web site that presents information on clinical trials worldwide. To narrow down your search criteria, use the advanced search feature found on the home page.
The websites shown in this article are all accessible at no charge to the public. You can use any of them to get a list of articles and, usually, abstracts (summaries) of articles for free. But access to full-text articles often requires a fee.
PubMed
It was early April of 2015 when I started getting headaches, weakness and abnormal heart rates simultaneously whenever I exerted myself. Stairs became a nemesis, as I could feel myself about to faint whenever I reached my apartment on the third floor. I thought that now would be a good time to visit the doctor. There I had blood work done and a few hours later they called and told me to go to the ER immediately. “So…I shouldn’t go hiking right now?” I joked, despite the weakness in my legs.
At the last race of my high school cross country career, I stood on the starting line with one hundred other girls and repeated only one thought - “just finish”. I didn’t think about winning. I didn’t think about beating any records or trying to beat anyone, for that matter. I just wanted to finish. I wanted to look back and know that I did this one thing for me. I wanted to know that I did something that scared me, something that no one expected me to do, and something that I wasn’t even sure I could do. I wanted to power through this race and finish.
In November 2013, I was 22 years-old and going to school part-time for nursing while working as a Certified Nursing Assistant at an assisted living home. I was almost through my first semester of classes when I got a cold. I didn’t think much of it because my girlfriend, Abby, had been sick a few days before. By the end of the week I wasn’t feeling much better. Little pink dots (petechiae) on my arms and legs started to appear.
Telemedicine, also known as telehealth is becoming a daily medical standard practice used by healthcare professionals throughout the world. Formally defined, telemedicine is the use of telecommunications technology, by medical practitioners, to remotely evaluate, diagnose and treat patients (GlobalMed). This is made possible by the use of a variety of applications and services that include using two-way video services, email, smart phones, wireless tools, and other forms of telecommunications technology.
What Services Can Be Provided By Telemedicine?