I am digging the Guthy-Jackson Charitable Foundation! When their teenage daughter was diagnosed with neuromyelitis optica (NMO), which is a rare, demyelinating, autoimmune disease that can be life-threatening, parents Victoria…
Continue ReadingNMO: How One Mom and Pop Founded an Empire of Hope!
Santa's not the only person making Naughty or Nice lists--and here's how to stay off of at least one of 'em! I gotta admit, I’m new to the Tourette syndrome…
Continue ReadingTourette Syndrome: 10 Facts that Will Make You Smart
Okay, I’m just baffled. Baffled. I’m trying to process my feelings as I’m writing this article because, well, that’s what women have to do sometimes. So, I just posted two…
Continue ReadingCurb Your Enthusiam About Tourette’s and Change Your Mind
OMG. It’s a Friday afternoon and as I’m sitting here, my heart is breaking for people with neuromyelitis optica, a very rare disease that use to be considered a rare…
Continue ReadingNMO: This Doctor’s Advice for Parents Makes Perfect Sense! Here’s Why…
Most everyone these days has heard about multiple sclerosis (MS) but aren’t so familiar with neuromyelitis optica (NMO), which is also called Devic’s disease or Devic’s syndrome. What’s so important…
Continue ReadingWhy a Misdiagnosis of MS Could Kill You if You’ve Got NMO
Let's take a stroll down memory lane to gain some perspective on Tourette’s syndrome… Years ago, when the famed comedian and director, Larry David, produced an episode of Curb Your Enthusiasm, which…
Continue ReadingTourette’s Syndrome: The Truth About Curbing Your Enthusiasm
I dig those peeps at WorryWiseKids.org who are helping to raise the bar to better understand Tourette’s syndrome (TS). Their mission is to lessen the suffering that children with Tourette's…
I read a report recently from the New England Journal of Medicine about a clinical trial and thought I’d share it with you because it’s about Fabry disease, a genetic disease…
Continue ReadingFabry Disease: Three Cheers for Unrelenting Scientists Fighting for a Cure
My heart breaks for children who are suffering from a chronic or rare disease such as refractory epilepsy or Glut1 disease. My heart breaks as well for their parents, siblings, and grandparents…
Continue ReadingRemarkable Ketogenic Diet is Hailed Tremendous by Mom
Shocker! Did you know it’s possible to acquire hemophilia? There’s a professor who I’m obsessed with from Texas—that would be “obsessed” as in a healthy obsession! And here’s why: He…
Continue ReadingWanted: More Brilliant Professors to Dumb Down Hemophilia
In Himanshu Sharma’s article posted on Onlymyhealth.com back in 2014, it appears that the basics are there. But I’d like to offer my own take since I happen to have…
Continue ReadingAplastic Anemia Basics – What Everyone Needs to Know
Dreams are coming true for this little girl living with aplastic anemia! Source: www.pixabay.com
I feel like shouting from the rooftop after reading about this 7-year-old girl named Yasmin. After a long hospitalization that spanned several months, she finally got released because her body…
Continue ReadingAplastic Anemia: This Fabulous Fairy Princess Will Warm Your Heart
I’m impressed of with the direction of the Fabry Support & Information Group (FSIG) and the offerings they have. In August 2016, they had a Fabry Family Get Together at…
Continue ReadingFabry Disease: These Pharma Giants Truly Have Heart and Billions to Share
Australian scientists have developed a new blood test that has potential to identify Parkinson’s disease (PD) (early) in people, which is enabling doctors to better treat their patients who have…
Continue ReadingIs Hope Just Around the Corner for Parkinson’s Disease?
Miracles never cease to amaze me. And quite frankly, it’s been a long time since I’ve been convinced that one actually has happened—although in theory, I welcome miracles every day!…
Continue ReadingWhat Do You Think, is This an Aplastic Anemia Miracle?
If you are trying to dive into aplastic anemia, here are some interesting facts from the Seattle Children’s Hospital that you should definitely check out. First, for anyone who’s been…
Continue ReadingCheck Out These Interesting Facts on Aplastic Anemia and Expand Your Mind
Amidst the hype leading up to the first head-to-head American Presidential debate with Trump vs. Clinton, the topic of Venezuela’s drug shortage of aplastic anemia drugs wasn't mentioned. But having…
Continue ReadingCould Aplastic Anemia Healthcare Crisis Strike in the States?
Are you a guy who'd rather suck lemons than talk about your Sjogren's syndrome? Men who are living with Sjogren’s syndrome are sometimes forgotten because the disease mostly affects women…
Continue ReadingSjogren’s Spotlight: Simplistic Special and Superior Support for Men
I am completely BAFFLED About Addison’s disease! Are you?! You Should be! It’s Monday night, and I’m sitting—rather, lounging on the sofa, feeling baffled after reading a post from a…
Continue Reading10 Shocking Symptoms of Addison’s Disease Will Save Your Life
In my humble opinion, the Urology Care Foundation has set the standard when it comes to providing factual information about Cushing’s syndrome (CS). And if you or your loved one…
Continue ReadingDo YOU Know the Difference Between Cushing’s Disease and Syndrome?
Have you experienced unexplained, sudden weight gain? Or, despite the number of times you’ve faithfully stuck to a diet, have you failed to lose weight? If either or both of these…
Continue ReadingYes to Any of These Questions Could Be Bad for You
Dealing with dystonia? Well, here’s an idea that’s tracking well with many neurologists and patients: Botox. Yeah, Botox—for dystonia! Who knew that a little old bovine injection could benefit people…
Continue ReadingGot Dystonia? The Truth Behind Pioneering Boxtox Treatment
After talking on the phone with some of my family members, I felt a range of emotions from anger and frustration to guilt and sadness. It breaks my heart because…
Continue ReadingS.O.S. for HD Advice: How to Convince Families to Get Support
I’ve gotta hand it to this German gal named Karina, who posted an article about her journey living with Ehlers-Danlos syndrome (EDS), a chronic illness that affects connective tissues in areas…
Continue ReadingEhlers-Danlos Syndrome: One Woman’s Rant is Unsurpassed
I’m continuing on my long flight to Brazil, AKA, “Zikaland”—in my opinion, (BTW, I do LOVE Brazilians, I just HATE what’s happening). I’m wondering if Brazil is one of the…
Continue ReadingAplastic Anemia: Guaranteed Laughs in the Face of Your Fear Factor
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