Dystonia and Nolan’s Family
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…
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Dystonia and Nolan’s Family
What This Kid Did To SCID Will Have You Jumping For Joy
Imagine you're a new parent and your two-month-old starts experiencing some bizarre symptoms. Along with his high fever, his skin turns red and starts peeling at an alarming rate. Multiple infections follow;…
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What This Kid Did To SCID Will Have You Jumping For Joy
que sucede cuando un pueblo ama a sus hijos? Se viste de púrpura
Cistinosis, una de las muchas enfermedades raras, genéticas en el mundo de hoy ... Como en cualquier buen artículo, el lector primero debe estar provisto de una breve historia del…
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que sucede cuando un pueblo ama a sus hijos? Se viste de púrpura
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Un avance en la cura para la cistinosis viene en camino!
En un comunicado de prensa informó de BusinessWire, la Fundación de Investigación cistinosis, CRF, concedido subvenciones sin precedentes de $ 1.022.879 a instituciones de investigación por lo que es posible…
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Un avance en la cura para la cistinosis viene en camino!
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10 cosas que usted necesita saber al tener un bebé con espondilitis anquilosante
Ahh, el milagro de la vida. Aunque es una cosa hermosa, el embarazo puede convertirse en una cosa cada vez más doloroso para las personas con artritis y enfermedades relacionadas.…
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10 cosas que usted necesita saber al tener un bebé con espondilitis anquilosante
Editor’s Choice: Pharma Freebies, Gadgets, & Nightmares
Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets! What do pharmaceutical companies mean…
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Editor’s Choice: Pharma Freebies, Gadgets, & Nightmares
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Is Social Taboo The Reason Behind Your Misdiagnosis?
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,…
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Is Social Taboo The Reason Behind Your Misdiagnosis?
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DBHD: What In the World is That?
If you have dopamine beta hydroxylase deficiency (DBHD), you're part of a very exclusive club, one that you probably would have passed on if you'd had the chance. With this…
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DBHD: What In the World is That?
Why There’s No Good Time to Slow Down with POTS
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…
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Why There’s No Good Time to Slow Down with POTS
skalekar1992 / Pixabay
¿Alguna vez te has preguntado que hizo mi bebé para merecer esto?
Imagínese estar preocupado porque su risitas 6 meses de edad hijo no quiere comer, tiene estreñimiento, y la pérdida drástica de peso. Los médicos le dicen que tiene una enfermedad…
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¿Alguna vez te has preguntado que hizo mi bebé para merecer esto?
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How YOU Can Increase Funds for Blood Cancer Research
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…
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How YOU Can Increase Funds for Blood Cancer Research
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Dysautonomia and Its Astonishing Effects
Dysautonomia is an umbrella term for a number of disorders of the autonomic nervous system (ANS). But to understand the collection of conditions called "dysautonomia," first we have to understand…
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Dysautonomia and Its Astonishing Effects
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You Need to Hear This Parkinson’s News
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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You Need to Hear This Parkinson’s News
Caregivers Need To Be More Selfish
Being a caregiver is among the most important jobs a person can take on, but it comes with its own set of perils: isolation depression sleep deprivation So, if you…
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Caregivers Need To Be More Selfish
El cannabis Directo a la sangre ?! Este nuevo fármaco podría ser un cambio importante
Gran yerba! Parche de marihuana en camino ... Y No estamos soplando humo. Zynerba Pharmaceuticals está trabajando hacia parches para entregar los productos químicos derivados del cannabis directamente al torrente…
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El cannabis Directo a la sangre ?! Este nuevo fármaco podría ser un cambio importante
Nolan Discusses Dystonia Treatment
There [are] treatment[s] for symptoms for dystonia. For neuropathy they can give you things like anti-depressants which have been known to curb neuropathy. They can do botox injections into the muscles…
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Nolan Discusses Dystonia Treatment
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This Amyloidosis Research Benefit is Less Than 2 Months Away!
Doggone, it feels good to fight amyloidosis! The condition causes abnormal proteins to be deposited in organs like the kidneys and heart. That's got bad news written all over it. But…
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This Amyloidosis Research Benefit is Less Than 2 Months Away!
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¿Eres un paciente de tiempo completo? Mereces un descanso!
Mientras que el verano vientos hacia abajo, muchos de nosotros están luchando para conseguir una vacacion más. Ya se trate de un día en la playa, un picnic en el…
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¿Eres un paciente de tiempo completo? Mereces un descanso!
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Want to Know How You Can Help Raise Amyloidosis Awareness?
Hey, do you like helping people--especially people who have amyloidosis? Also, do you live in or near New Jersey? Or will you be in the area later in September? If…
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Want to Know How You Can Help Raise Amyloidosis Awareness?
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Why is a Micropenis Nothing to Laugh At?
Kallmann syndrome is a genetic condition caused by hypogonadotropic hypogonadism (HH), of which four separate types have been identified. People with Kallmann syndrome experience olfactory deficiencies, and puberty that is either…
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Why is a Micropenis Nothing to Laugh At?
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Sjögren’s Syndrome Can be a Pain in the A$$
Sjögren’s syndrome is an autoimmune disease that affects the moisture-producing glands in the body, including the salivary and tear glands. Very often, it's accompanied by rheumatoid arthritis. It's thought to…
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Sjögren’s Syndrome Can be a Pain in the A$$
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New Research on FH Shows Just How Heart-Wrenching It Can Be
Saturday September 24 is FH (familial hypercholesterolemia) Awareness Day, and it couldn't come soon enough. That's because, according to new research published in Circulation (the journal of the American Heart Association),…
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New Research on FH Shows Just How Heart-Wrenching It Can Be
Jugando en un nuevo campo: la conciencia de la distonía
Antes de que un conductor atropello y fuga golpeó Pat Brogan mientras montaba su bicicleta, él nunca había oído hablar de la distonía, un trastorno cerebral que causa calambres musculares…
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Jugando en un nuevo campo: la conciencia de la distonía
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The Surprising Hidden Benefit of Laron Syndrome
People with Laron syndrome, an autosomal recessive disorder, have mutations or deletions of the GHR gene which results in a type of dwarfism. It is most commonly seen South America, in Mediterranean countries,…
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The Surprising Hidden Benefit of Laron Syndrome
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Little Girl With CAPS Faces a Bright Future
Here’s a charming and ultimately optimistic little story about how a mother’s vigilance combined with the right doctors and hospitals can make a real difference in a child’s life—and how…
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Little Girl With CAPS Faces a Bright Future
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