Call me crazy, but I’m pretty sure September was trying to kill me. The whirlwind romance with summer is over. All the front displays of the supercenters showcase the brilliantly…
You're doing everything right for your newborn baby, including having a heel stick so your child can be tested for a host of genetic abnormalities. Life is good. Weeks later,…
Sabemos que la sobre exposición al sol provoca una situación grave quemadura o sus cortezas, pero ¿sabía usted que el sol puede ser especialmente peligroso para las personas con una…
The Castleman Disease Collaborative Network is hosting a gala next month to raise money to continue to research the causes of Castleman Disease and find the cure. Castleman is as…
I’ve written several articles recently on Cushing’s disease and the difference between it and Cushing’s syndrome—which I felt compelled to do because, I admit, in my own naivety, perhaps like…
Bitartrato de cisteamina es su nombre, y salvar vidas es su juego. No es frecuente que se escucha una droga conocida como (probablemente debido a las ramificaciones legales) "salvar vidas",…
Si usted ha estado sufriendo de colesterol alto con las puntuaciones tristemente lipoproteínas de baja densidad (LDL), aquí hay algunas noticias de última hora que podría salvar su vida! La…
Have you ever tried to run a marathon? If so, you’ll know how taxing and strenuous the race can be on your body. Now, consider this: What if you had…
What happens if your adrenal glands produce too little cortisol, and perhaps an insufficient level of aldosterone, as well? Addison's disease is the end result and it can be life-threatening.…
Do you experience pain? Weakness? Swelling? Burning sensations? Dull ache over an affected area? Oddly enough, your career may be the source of your symptoms. Not to stir panic but…
BMC Medicine recently started an idiopathic pulmonary fibrosis (IPF) article collection. It should help educate patients, caregivers, and healthcare professionals by delivering the most up-to-date research and latest advancements in treatment.…
Wondering how to make your vitamins rock dystonia? (Not as badass as Chuck Norris, of course.) If yes to the vitamins, then read on! There are multiple forms of dystonia, and…
I watched a very cool video that follows one woman’s quest to finally get the answers she needs. Ultimately, it led to her diagnosis and subsequent treatment for Cushing’s disease.…
Kudos to the Cystic Fibrosis (CF) Foundation for building a mighty network of care centers for CF patients all across this great nation of ours! The Foundation has set forth…
Two years ago, my phone rang in the middle of the night and our journey with heterozygous familial hypercholesterolemia, or HeFH, began. My immediate thought was I'd won the Publisher's Clearinghouse Sweepstakes…
Schnitzler syndrome was initially identified in the 1970s. Patients usually have fever, bone and joint pain, fatigue, anemia, enlarged liver and spleen, and a strange rash. The rash is resistant to…
We all need to cheer and whoop it up for these two brave women who suffer from Ehler-Danlos! Brooklyn Mills and Erika Crawford, who are living with the condition, decided…
The WDA have over 1150 participants for this year's Big WOW! happening October 1st in cities all across North America. If you haven't had a chance to sign up, now's the…
This is outstanding: However, be prepared because what I am about to say may not be popular, but it's my truth. It breaks my heart that adults with rare disease…
Maroteaux-Lamy Syndrome, also known as mucopolysaccharidosis (MPSVI), is a lysosomal storage disorder. It's one of a number of disorders that affects specific enzymes in specific locations. The job of these…
I shared it with my family. I shared it with my wife, my mother and my brother of course, and they were grateful that it wasn’t something that was going to…
Life is hard. Life gets even harder for a woman once a month. The topic of menstruation always has been sort of taboo. I remember getting my first period. While crying on the toilet,…
Lifestyle adjustments. You know your life will change once you get a disease diagnosis. These changes may be easy or hard depending on how you are currently living life. For…
Remember the Parkinson’s disease Ice Bucket Challenge mania that spread across the globe? Did you find yourself overflowing with ideas about equally awesome challenges or ways to raise awareness and…
As a self-described science nerd, I always feel a thrill when I read about a new drug reaching Phase 3 of a clinical trial. At that point, chances are very…
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