Let's talk cholesterol—the bad kind, 'cause there're different kinds. LDL cholesterol, or low-density lipoprotein cholesterol, is the kind you DON'T want, because it can lead to a whole host of…
A few months ago, I went on a rant about the FDA's failure to approve a drug that would benefit children with Duchenne muscular dystrophy, or DMD, a muscle-wasting disease.…
My cousin, Richard, lost his sight to retinitis pigmentosa when he was 35 years old. He adjusted considerably well due to his vision loss being so gradual. He had already…
Over the past few months, I’ve been trying to support my dear friend Julie, as she cares for and mothers her child, who was recently diagnosed with transverse myelitis (TM).…
No hace mucho tiempo, leí un artículo sobre la lucha heroica de un padre para luchar contra la injusticia de su hijo que está viviendo con una enfermedad autoinmune genética…
What do we deserve? If we're unwilling to take care of ourselves, should we expect others to take care of us instead? For example: If we're eating large portions of unhealthy…
Being that the month of November is upon us (can you believe it?), I want to take a moment to express what I'm thankful for. I am thankful to live…
Dear Moms Dealing with Narcolepsy, Just because all the other moms do it, doesn’t mean you have to. Too often, moms feel like they have to be given permission. For…
Whether you’re trying not to gain weight over Thanksgiving, or the prospect of being around a bunch of food you can’t eat because it would be bad for your rare…
Okay, yes, so this study was published in 2011, but time is obsolete, am I right? Especially when it comes to information as important as this. Listen closely. Remember leprosy?…
The physicians who left me undiagnosed said "we" missed the brain tumor. WE?! YOU, the 10 or 12 doctors I saw, missed that I had acromegaly. The doctor who finally…
¿Alguna vez tiene alguna pregunta acerca de la quema de una enfermedad rara que te mueres por saber la respuesta? Nosotros también. Un montón de ellos. Es por eso que…
Para aquellos que tienen el síndrome de Sjögren, que no necesita toda la verdad. Pero para aquellos que no conocen, se asocia comúnmente con los ojos dos principales síntomas-secos y…
Immune thrombocytopenia purpura, or ITP, is a bleeding disorder caused by a lower than normal number of platelets, otherwise known as thrombocytes. Platelets are made in the bone marrow and when…
Mastocytosis is a rare immune disorder that is broken down into two categories: cutaneous (CM) systemic (SM) It affects men, women, and children in equal numbers. Children are more likely to have…
Talk about rare diseases/ disorders/ conditions/ syndromes... there are only seven (SEVEN!!) documented cases of Gorlin Chaudhry Moss syndrome (GCM) in the world. All females. So, does as it come…
Fabry Disease is the number number two Lysosomal Storage disease in terms of numbers affected. It is an X-linked disease, with males passing on the mutated allele to all of their…
Have you ever heard of polycythemia vera (PV)? Me neither, and that’s why I had to do some digging. There were quite a few facts that carried some heart-string shock…
Gastroschisis is a birth defect where the intestines and sometimes other abdominal organs such as the stomach or liver are outside the body, rather than inside. This used to come as…
As more states open their arms to the wonders of marijuana (for medical purposes and for fun), they're also opening up a whole new way to look at treating rare…
In honor of liver awareness month, we've got some good news for people living with NASH, or nonalcoholic steatohepatitis. NASH is a kind of fatty-liver disease that is not connected to…
When I hear the word Parkinson's, the first image that comes to mind is a long-haired guitar player on stage, captivating the hundreds of people who'd come to hear his…
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…
Can you imagine your toddler son having to get a lumbar puncture in order to be diagnosed with a condition that, despite the fact that you've never heard of it, he'll…
If you're reading this, I want you to forget who you are and take on the identity of a doctor, specifically an endocrinologist... starting NOW! GO! The Case A female…
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