Kallman syndrome is a condition in which puberty is delayed or completely absent from the individual. According to the NIH, it effects just one out of every 10,000 to 86,000…
Hipercolesterolemia familiar heterocigótica (o HeFH), nunca has oído hablar de él? Es un bocado. Es también una condición que hace que los niveles de colesterol de alta peligrosidad y, si…
Carcinoid tumors are rare and most often occur in the lungs and intestinal tract. When they secrete chemicals into the blood stream, the follow symptoms may occur: skin flushing, facial…
This summer, while visiting friends in Chicago, I met the most amazing woman Angie. She was out for the first time since she had her beautiful daughter, so we looked…
According to a recent study, patients who were previously treated for acromegaly were at an increased risk for bone fractures after being treated with growth hormones for six years. Scientists at VU…
¿Alguna vez has oído hablar de la deficiencia de Glut1? Basada en una historia ofrecida en News-Medical, y no tenían los padres de su hija diagnosticadaa los 4 años de…
My brain is CRAZY! At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain! So, what’s…
When I was 14 or 15 years old, my father was deployed and the family was a little anxious say the least. That's why, when I woke up one spring…
As someone who went through long-term antibiotic treatment, I can speak to the tremendous financial strain it had on my family. Well, if you live in Massachusetts, new legislative action…
Glucosa. Esto significa que el azúcar, ¿verdad? Está en su cuerpo, ¿verdad? Pero, ¿cómo se transportan y cómo sabe que su cuerpo la cantidad que necesita para el transporte? Lo…
Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…
Because I have chronic inflammation due to Lyme disease and POTS, I'm constantly taking supplements and eating the right food to reduce that inflammation. Yes, that means I have to…
Si usted es una de las pocas personas en EE.UU. que viven con el síndrome de quilomicronemia familiar (FCS por sus siglas en ingles), lo más probable es que usted…
Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…
Jake Krahe, un joven de Montville Township, Ohio, ha estado viviendo con una enfermedad rara desde que tenía 19 meses de edad informa 19 action news. El diagnóstico específico es la…
If you are a rare disease sufferer in the midwest, then you should know about the US Pain Foundation's Pain Treatment Expo in August. So why go? You may find…
Over the last eight months, I've been in post-treatment Lyme life, allowing me to be more social. With that comes the dreaded social interactions where I have to explain why I'm tired, am…
Los científicos han localizado descubrimiento clave en la categoría de las Enfermedades Raras Un gen que puede jugar un papel en la solución de los misterios de enfermedades autoinmunes como…
Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones. Opción 1: Vive la vida sin hacer nada y esperar a que llegue el final O Opción 2: Aprender lo…
It's no secret that Scrubs helped me get through Lyme treatment, as it is surprisingly profound. In Season 5, Episode 6 there is a very pleasant older woman who has…
¿Crees que sabes todo lo que hay que saber sobre la espondilitis anquilosante (EA)? Piensa otra vez. Una nueva investigación ha revelado que las personas con AS tienen un mayor…
Happy August Patient Worthians! We hope you're able to keep cool in this current heat wave. This month is Autoinflammatory Disease Awareness Month and we want YOU to know how to get involved.…
Síndrome de Muckle-Wells Es raro. Es real. Está listo para causar inflamación excesiva a lo largo de todo el cuerpo con síntomas tales como fiebre, artritis, y malestar general. Esta…
Welcome to this week's Editor's Choice! Mysthenia Gravis has to be treated delicately, as it's unpredictable and often incredibly painful. That's why the blogger we've highlighted below wants you to…
Inmunodeficiencia Primaria y Disautonomía - Vivir con una enfermedad raraIlana Jacqueline se parece a una mujer joven perfectamente sana, pero las apariencias pueden ser engañosas. Tardó 19 años para que…
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