One of the most frustrating parts of having a rare disease is getting the dang diagnosis in the first place. We've all heard the garbage excuses before: "It's all in…
There's no doubt that living with a chronic illness is difficult. There may be certain things you can't do and activities you can enjoy. Even so, if you let that…
Few topics in medicine are as fraught with controversy as medical marijuana. Decades of debate over the harmful effects of recreational marijuana use—to mention nothing of its depiction in popular…
Bronchopulmonary dysplasia (BPD) is a condition that mainly affects premature infants who have very low birth-weight (under 2.2 pounds). Because the baby's lung tissue is underdeveloped, respiratory distress can result,…
El angioedema hereditario, o AEH, es una rara enfermedad genética que es potencialmente mortal con un muchas preguntas sin respuesta aún. Sin embargo, los científicos del Instituto Karolinska en Suecia,…
If you're a woman experiencing a multitude of heavy bleeding days, you should do two things as soon as you can: Check out this website Talk to your doctor According to…
If you're living with Familial Mediterranean Fever (FMF), you know the headaches (literal and figurative) that come along with it. One of those headaches is finding treatment. Especially a treatment that…
Unfortunately, there will always be bad days. The thing is, you are allowed to feel miserable sometimes. Everyone does. The important thing is that you pick yourself back up, sometimes…
How much do I love that there’s a Pinterest page called 1000+ Ideas About Ehlers-Danlos Syndrome Products?!? Way to go, EDS community for sharing info, ideas, and support! I found…
If you have any experience with autoinflammatory diseases, you know that there are a number of things they have in common. Autoinflammatory diseases are: often confused with autoimmune diseases tend to…
La Red de Investigación cistinosis (CRN), una organización benéfica con sede en Chicago, acaba de terminar su conferencia de alojamiento de viajes de verano, "sueño, alcance, Inspire" ilustraciones Muestra Internacional.…
Para un adolescente "normal", los mayores problemas de la vida por lo general incluyen no ser capaz de decidir qué ropa llevar a la escuela, qué chico que decir que…
Welcome to this week's Editor's Choice! We hope that those of you who are having a back-to-school week, are smooth sailing! This week, we have some news on IPF and hemophilia…
If a treatment that would cure me or my child had to use dogs for testing, what would I do? That’s the question I had to ask when I saw…
When the going gets tough, think about how good it will feel once your past the rough patch. You should be proud of yourself and your resilience and how far…
Not too long ago, NIH introduced its Genetics Home Reference pages to the 21st century. Now, you no longer have to feel like you’re wadding through Geocities when you’re doing your research.…
Do you live in the United States? Are you an adult? (Meaning, are you older than 18? Whether or not you have your life together does not apply to this…
Puede la marijuana ser usada para fines medicinales? Es obvio que no somos los primeros en hacer esta pregunta como el debate nacional el uso de la hierba famosa de…
Classified as a "chronic movement disorder," dystonia may appear to some as a disease of the muscles. Like it's cousin Parkinson's disease, however, dystonia is actually a neurological defect. While it's…
1. What people I don't know think my Hereditary Angioedema (HAE) swelling is: 2. What my previous boss thinks my swelling is: 3. What the ER thinks my swelling is: 4.…
IPF (Idiopathic Pulmonary Fibrosis) Awareness Month is coming up in September. To help raise awareness post something on your favorite social media site and use #IPF #IPFWorld #BlueUp4PF! Go to…
Clinical trials are absolutely critical to our understanding of how a drug works and whether it’s safe for use in humans. While clinical trials are not the final word in…
About two months ago, I bucked up and started recycling. (No this is NOT clickbait.) Now let me first explain that for years as a “responsible adult,” I did my…
¡NOTICIAS DE ÚLTIMA HORA! Pronto puede haber otro tratamiento para pacientes del IP! La compañía ADMA Biologics, Inc. ha desarrollado una nueva opción de tratamiento, RI-002, para los pacientes que…
Everyone has bad days, but don't think for a second that you can't handle this. The chronic life is rough but you're stronger than you know!
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