#raredisorder

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please stop telling parents of special-needs children that they are chosen or special Why? just in the last week when we spent a week in Tennessee at the Special Olympics we must have heard this comment over 20 times. A study done on mothers of children with intellectual disabilities or autism found that we are 40% more likely to die of cancer; 150% more likely to die of cardiovascular disease and nearly 200% more likely to die from misadventure (a category that includes accident, suicide, and homicide) than other mothers. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0113430 This study did not even consider those who have a child with significant lifelong physical disabilities. And even if we are fortunate enough to escape the chronic disease risks of the SN life, we still have far higher rates of depression, anxiety disorders and PTSD than mothers of typically developing children. Perhaps our premature death or psychiatric problems are still considered acceptable struggles within the realm of ‘Gods plan’. Theological views aside though, trying to calm someone down with platitudes dismisses their experience of hardship and diminishes the actual support being given. It dismisses the shattering of a mother’s heart when she hears her child’s diagnosis for the first time. It minimizes the agony of a mother who wakes every hour of the night to soothe a child whose brain won’t allow them to sleep. It ignores the wounds inflicted on a father watching his child being drugged and then resuscitated in the triage bay after another uncontrolled seizure. It overlooks the physical toll that caregiving takes on the body and the hopelessness that clouds the mind when exhaustion takes hold. The truth is, a lot of days, it really doesn’t feel like we’re handling it at all. #specialneedsparenting #specialneedsparentstruggle #ptsd #raredisease #raredisorder #braininjury #Schizencephaly #lissencephaly #anacephaly #polymicrogyria #inclusion https://www.instagram.com/p/B8L6W4ZJM9_/?igshid=1gq80fieo3vcn

#raredisorder #wearerare #rarebrain #Schizencephaly #lissencephaly #anencephalyawareness #hydrocephalus #brain #neurology https://www.instagram.com/p/B0bAyjTBhER/?igshid=1931fo84ownad

If you are affiliated with a #raredisease advocacy organization, we're here to support your efforts through our new RareXcel program. Learn more at https://corp.inspire.com/rarexcel. #RareXcel #raredisorder #epatient

#Repost @gray_sanmartin with @repostapp ・・・ Meet Alison. She moved to New York City from Idaho to pursue her dream of becoming a model and actress. Alison was born with Treacher-Collins syndrome, a rare genetic condition that leads to difficulties with the structure of the face, and has had nearly 100 sessions of reconstructive surgery. Now, her goal is to inspire individuals who are struggling with their self-esteems and disabilities. **Working with my super talented friend @fabiana_sala on this new project Trailer coming soon... **** #rarediseaseday2017 #raredisease #treachercollins #treachercollinssyndrome #raredisorder #wrdd2017 #genetic #disorder #syndrome #hereditary #raiseawareness #inspiring #beauty #different #nyc #model #actress#photoshop #photography #pictures

Ashleigh Mounger, 28, pictured at left, with her sister, Maurisa Mounger, 19. Ashleigh was diagnosed with the rare disease Wilson's Disease in 2007, and she needed a new liver or she would have died, according to news reports. Maurisa donated more than half of her liver to her older sister, and both are now healthy and recovering, the story says: http://www.9news.com/story/news/health/2015/07/17/sisters-living-donor-liver/30324163/. "I have one scar that I am very, very proud of," Maurisa said. #wilsondisease #wilsonsdisease #organdonation #organdonor #raredisease #raredisorder

February 28, 2015 marks the eighth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organizations from more than 80 countries and regions worldwide are planning awareness-raising activities around the slogan Day-by-day, hand-in-hand.http://www.rarediseaseday.org/article/about-rare-disease-day #RareDisease #raredisorder #rarePOV #patients#RareDiseaseDay