Tener un hijo con discapacidad severa es estar condenado a estar atrapado en el tiempo. Para siempre, padres/madres de bebés. Pero los cuerpos envejecen, las fuerzas flaquean y los ‘bebés’ pesan 80 kgs. Los parias. Los olvidados. ¿Quien cuida al cuidador? https://www.laopiniondemalaga.es/malaga/2020/01/21/atrapados-vejez-hijo-dependiente/1139919.html
#RareDiseaseDay is about raising awareness for people living with a rare disease around the world.
Share your story at https://www.rarediseaseday.org/tell-your-story to raise awareness!
Tracking seizures, moods, and behaviors over time may help you to recognize patterns, then modify your behavior or lifestyle appropriately. A journal or a diary like the Epilepsy Foundation's My Seizure Diary can be a helpful tool. Learn more: https://bit.ly/2xyYE55
The disorder is characterized by early-onset cluster seizures, cognitive and sensory impairment, and psychiatric and behavioral disturbances. Learn more about the Violet Study and #PCDH19: http://www.violetstudy.com/
Gran jornada sobre epilepsia en la infancia organizada por nuestros amigos de @apoyodravet
Allí estaremos y tú?
hablando, aprendiendo, jornadas epilepsia infantil
8 febrero @ClinicaCorachan
@FEDER_ONG @fedeepilepsia @EpilepsiaHRI @mar_de_somnis @cdkl5spain @fswest @stxbp1 @scn2aeurope @Fswh4pmenos @SindromePOCS
Ups and downs are both needed in maintaining harmony 👍
#neuroscience #gaba #research #balance #yingyang #neuro #motivation
Great example through @rburdine1 for why having access to medical publications is SO EXTREMELY IMPORTANT for patients and caregivers 😡
Open access can avoid drug-induced comas and possibly deaths. This is important!
Please sign http://oaintheusa.com
@VMSFMom @EmLyWill @CNSdrughunter @mattmight The option lots of doctors go for is to put the kids into a drug induced coma. 4 days of valium at home trumps that by a long shot. But Drs can't take treatment advice from parents on FB! (Nor should they.) But handing them a peer-reviewed PDF - helpful. /2
“Once we learned Louise had #CDKL5, our lives were changed forever,” Teresa Gorman tells us. “While they may not always be happy times, they are real-life, & we are a stronger family because of it.” For more on our clinical trial for children with CDKL5: http://www.themarigoldstudy.com