Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.
So the more I read about Lyme disease, the more worried I get. With over 300,000 cases alone reported annually to the CDC, we don’t know how many undiagnosed people…
I’m not sure I’m completely tracking this article on how to stay safe from Lyme disease. Don’t get me wrong, I totally get that she’s writing an article about how…
For years, patient advocates and insurance companies have been outraged and fighting about a Lyme disease bill in Massachusetts that is controversial. The proposed bill, if passed, would provide long-term…
I recently read an interesting article about a new drug for hemophilia B called: Idelvion [Coagulation Factor IX (Recombinant), Albumin Fusion Protein] which I highly recommend that you read. It…
Could it be? Could it REALLY be true? A breakthrough treatment for Lyme disease is here?! Well, according to what I read on the PR Newswire, it is. A specialty…
What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…
I recently read an article about Hemophilia A and B from the Cleveland Clinic. I thought it was incredibly helpful because, sometimes, I get confused about the differences between the…
Dutch-American Reality TV star Yolanda Hadid, who is widely known for her supporting role on The Real Housewives of Beverly Hills, announced in the fall of 2015 that she was diagnosed…
When I heard about the “Time for Lyme” Gala event that was held in early April 2016, I was tickled pink. These two daring Connecticut Moms, Rachel Robards and Marissa…
Imagine your child is stuck at the bottom of a long transplant waiting list when he or she desperately needs a new liver. The thought is terrifying--and for many, terrifyingly…
Carri Levy’s article about a New Jersey couple John and Amanda Miller, is one of many articles and blogs I’ve read about the Millers; it’s really struck a chord with…
Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie. Smith has dedicated her life to helping other parents as a result…
Listen up, people! This is important—especially if you’re an expectant mother! This article featuring a video in Rare Disease Report, is about an incredible mom named Amanda Miller and her son, Evan. Evan…
And you thought walking down a dark alley was dangerous?! Well, try your own back yard! Vanessa Boyd is fighting for her life having been most likely bitten by a…
Living and Traveling with Primary Immunodeficiency Okay, just because you’re living with Primary Immunodeficiency (PI), doesn’t mean that you’ve got to be a little wall flower or confine yourself to…
Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don't die, but they languish and suffer; it’s…
Kudos and congratulations to TV station, KCRA 3 for heading up a special blood drive! They put the spotlight on J.J. and Carson Huish, twin boys who have Severe Combined…
Well, the French are at it again—thank goodness! French pharmaceutical company AB Science, announced in 2015 that it hit its endpoints in a phase lll clinical trial for human subjects who…
The online Women’s Encyclopedia, had an interesting article about Severe Combined Immunodeficiency (SCID) and I’d like to share some of the highlights: Fast Facts That EVERY Parent Must Know SCID…
Do you consider yourself a happy person? Are you cheery all the time? Most of us are not, regardless of who we are or the conditions we may have—with or…
When the legendary Venus Williams was diagnosed with Sjogren’s in 2011, it sent shock waves throughout the tennis industry and the world. Seems Venus is doing well these days, which…
I revisited an article about a clinical trial that focused on women with pulmonary arterial hypertension (PAH), and I’m still baffled, because it just doesn’t make sense. The information provided about…
Congratulations to Accelmed, the equity investors, who backed SoniVie, a startup company based in Israel that's made a breakthrough treatment device for pulmonary arterial hypertension (PAH). Of course, we owe a…
I have a love-hate relationship with big cities. Every time I visit NYC, for instance, I feel kind of claustrophobic. I hate that you can’t see large expanses of sky…
Happy Tuesday, Caregivers! I say this in all sincerity because as caregivers—it’s easy to find yourself actually dreading the weekends, right? You know what I’m talking about. You know that…
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