Has your son who’s 5’ 4” (or shorter) told you that he’s going to be an NBA player? Has your beautiful daughter who has weak ankles and knees spoken to you about her dream of becoming a prima ballerina? Does your son who has absolutely NO rhythm and can’t carry a tune in a bucket proclaimed himself to be a bona fide rock star?
That last one is mine. My son has identified himself as a rock star since he was a toddler. I’ve decided to go along with the dream even though I cringe a little every time he sings. That’s what moms are for – to help their children do whatever it takes, within reason, to achieve their goals. He’s also demanded at different times that he’s going to be president, the King of bowling, and a WWE superstar. I agree enough to give him self-confidence but we both know none of those things are likely to happen.
It’s one thing when the dreams children dream aren’t feasible because their bodies just aren’t built that way. Not everyone can be a professional athlete or leader of the free world. [Not going there but wouldn’t it be nice if someone with Down syndrome ruled the world.]
But what about when the dream is physically possible, but not “socially acceptable?” Continue reading I Can Be a Father (With Down Syndrome)
Advocacy around research is important, especially because Down syndrome is the least funded genetic condition by the National Institutes of Health (NIH). Continue reading April A to Z Blogging Challenge: Karyotype
In March 2018, 21 researchers published a study in the British Journal of Psychiatry called “Impact of cholinesterase inhibitors or memantine on survival in adults with Down syndrome and dementia: clinical cohort study.”
The researchers noted that there have been few studies conducted, and therefore little information is available on how to treat adults with Down syndrome and Alzheimer’s disease. They set out to test specific antidementia drugs on people with Down syndrome and Alzheimer’s disease. Continue reading Debate Over Study on Antidementia Drugs for Adults with Down Syndrome and Alzheimer’s Disease
Intellectual and Developmental Disabilities
Volume 55, Issue 5
Bone Mass Assessment in a Cohort of Adults With Down Syndrome: A Cross-Sectional Study
Ramón Costa, Rosa De Miguel, Clara García, Diego Real de Asúa, Santos Castañeda, Fernando Moldenhauer, and Carmen Suárez(2017) Bone Mass Assessment in a Cohort of Adults With Down Syndrome: A Cross-Sectional Study. Intellectual and Developmental Disabilities: October 2017, Vol. 55, No. 5, pp. 315-324.
Differences in bone mineral density (BMD) have been observed between adults with Down syndrome (DS) and the general population. The purpose of this article is to describe the prevalence of bone mass disorders in a cohort of adults with DS and their predisposing factors. We performed a cross-sectional study of 104 consecutively recruited adults with DS from an outpatient clinic of a tertiary care hospital in Madrid, Spain. We recorded epidemiological and anthropometric data, nutritional variables, coexisting clinical conditions, and laboratory variables. BMD was measured at the lumbar spine, total hip, and femoral neck using dual-energy X-ray absorptiometry. The prevalence of osteopenia ranged from 48% to 52%, and that of osteoporosis ranged from 19% to 22% depending on the site of measurement (femoral neck or lumbar spine, respectively). Age was the greatest risk factor associated for lower BMD, with similar bone mass accrual curve but with lower peak of BMD than the general population. We conclude that low bone mass is an extremely prevalent condition in adult patients with DS.
Music therapy may not be as common as some of the others we’re used to (PT, OT, and Speech) but it can be just as helpful. Most of the information online seems to be geared toward children – as we often see – but we can also approach music therapy from a lifelong learner perspective.
Continue reading M is for Music Therapy – A to Z Blogging Challenge
For me, the highlight of this weekend’s Down Syndrome Affiliates in Action (DSAIA) conference was the presentation is was honored to co-present. For the first time in 18+ months since I first wrote about the racial health disparities that exist in the Ds community, I felt like we might be moving forward.
Continue reading #CountUsIn – Co-presenting with NIH on #RaceAndDs
I could use a play on words and explain the reason this last post in our A to Z Blogging Challenge is late by saying something about forgetting to do it.The truth is that it’s a difficult subject to write, or even think, about. For those of us with adult children who have Down syndrome, the worry about Alzheimer’s disease is always present.
Part of our series of infographics on aging and Down syndrome
Continue reading Z – Alzheimer’s Disease
By: Stephanie Holland ***Update by Sujata Bardhan, Ph.D., Scientific Program Manager, DS-Connect Registry Coordinator
One great example of how the community comes together for the greater good is the collaboration that has happened to create the Down syndrome registry. The funding comes from NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), but ongoing input comes from parents, families, and representatives from every corner of the Ds world.