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…
This stage of life is hard. I’m talking right now to all the moms who are probably somewhere between late 20’s to early 40’s. You likely have a kid or…
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…
It's no fun when you're plagued with back pain; you know, the kind of pain that just doesn't go away. People who have ankylosing spondylitis, or AS, know this all…
Okay, yes, so this study was published in 2011, but time is obsolete, am I right?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…
5 años de edad, Hadley Alexander no es normal. Cada mañana, su día comienza oficialmente a las 7 a.m. Ella convenció despierto por sus padres y, a través de un…
¿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…
Happy Pre-Thanksgiving Week Friends! It is almost Thanksgiving which is one of our FAVORITE holidays here at Patient Worthy. Why? Because on this holiday, we are focused on gratitude, family and…
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…
When the pituitary gland overproduces growth hormone (GH), its usually because a pituitary adenoma has formed. An adenoma is a benign tumor that causes the patient to continue to grow. Hands and feet…
Gaining 51 pounds in three years may not seem like a lot, but for Amber Mickley it meant doubling in size. When she was nine years old, Amber was small for…
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…
Todos sabemos lo que es tener un mal día, una mala semana, o incluso un mal año. Pero la cosa es que, con el tiempo, las cosas suelen trabajar fuera;…
Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…
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…
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