Down Syndrome

Join the Conversation on
Down Syndrome
79K people
0 stories
2.6K posts
About Down Syndrome
Explore Our Newsletters
What's New in Down Syndrome
All
Stories
Posts
Videos
Latest
Trending
Post

What are we celebrating?! (MARCH)

national developmental disabilities month
Women’s history
National MS Education and Awareness Month
March 1-31: Alport Awareness Month March 1-31: Brain Injury Awareness Month
March 1-31: Brain Tumor Awareness Month (UK only)
March 1-31: Deep-Vein Thrombosis Awareness Month
March 1-31: Malignant Hyperthermia Awareness Month
March 1-31: Multiple Sclerosis Awareness Month
March 1-31: Myeloma Action Month
March 1-31: National Bleeding Disorders Awareness Month
March 1-31: National Cheerleading Safety Month
March 1-31: National Colorectal Cancers Awareness Month
March 1-31: National Endometriosis Awareness Month
March 1-31: National Kidney Month
March 1-31: National Nutrition Month
March 1-31: Problem Gambling Awareness Month
March 1-31: Save Your Vision Month
March 1-31: Trisomy Awareness Month
March 1-31: Workplace Eye Wellness Month
March 1-6: National Aplastic Anemia & MDS Awareness Week
March 2: World Teen Mental Wellness Day
March 3: World Birth Defects Day
March 3: World Hearing Day
March 4: HPV Awareness Day
March 4: World Obesity Day
March 5: Dissociative Identity Disorder Awareness Day
March 7: National Hospitalist Day
March 10: National Women and Girls HIV/AIDS Awareness Day
March 10-16: Patient Safety Awareness Week
March 10-16: Pulmonary Rehabilitation Week
March 10-16: Sleep Awareness Week
March 11-17: Brain Awareness Week
March 14: World Kidney Day
March 15: World Sleep Day
March 17-23: National Poison Prevention Week
March 18-24: National Drug and Alcohol Facts Week
March 20: National Native American HIV/AIDS Awareness Day
March 20: World Oral Health Day
March 21: World Down Syndrome Day
March 24: World Tuberculosis Day
March 26: Epilepsy Awareness – Purple Day
March 26: American Diabetes Alert Day
March 30: National Doctors’ Day
March 30: World Bipolar Day
March 17: Saint Patrick’s Day
March: autoimmune diseases awareness month

(edited)
11 reactions 4 comments
Post

Young Adult Books Featuring Genetic Disorders

Having genetic disorders can be isolating. So here are 4 young adult books about genetic disorders to tell you that you’re not alone:

1. “A Step Toward Falling” by Cammie McGovern
*This book may trigger individuals who experienced sexual abuse, violence, or assault. Please do not read if this triggers you!

Cammie McGovern follows up her breakout young adult debut, “Say What You Will”, with this powerful and unforgettable novel about learning from your mistakes, and learning to forgive. Emily has always been the kind of girl who tries to do the right thing—until one night when she does the worst thing possible. She sees Belinda, a classmate with developmental disabilities, being attacked. Inexplicably, she does nothing at all. Belinda, however, manages to save herself. When their high school finds out what happened, Emily and Lucas, a football player who was also there that night, are required to perform community service at a center for disabled people. Soon, Lucas and Emily begin to feel like maybe they're starting to make a real difference. Like they would be able to do the right thing if they could do that night all over again. But can they do anything that will actually help the one person they hurt the most?

2. “Just Breathe” by Cammie McGovern
David Sheinman is the popular president of his senior class, battling cystic fibrosis. Jamie Turner is a quiet sophomore, struggling with depression. The pair soon realizes that they can be their true selves with each other, and their unlikely friendship develops into something so much more. But neither Jamie nor David can bring themselves to reveal the secrets that weigh most heavily on their hearts—and their time for honesty may be running out.

3. “Five Feet Apart” by Rachael Lippincott
In this moving story two teens fall in love with just one minor complication—they can’t get within five feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals. Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment. What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

4. “Rules for 50/50 Chances” by Kate McGovern
A heartrending but ultimately uplifting debut novel about learning to accept life's uncertainties; a perfect fit for the current trend in contemporary realistic novels that confront issues about life, death, and love. Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she's going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington's disease, the degenerative condition that is slowly killing her mother. With a fifty-fifty shot at inheriting her family's genetic curse, Rose is skeptical about pursuing anything that presumes she'll live to be a healthy adult—including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.

📚 I hope this list can help someone 🧬

#themightyreaders #DownSyndrome #CysticFibrosis #HuntingtonsDisease #SickleCellDisease

2 reactions
Post
This photo may contain sensitive content.

made some mermaid photos for down syndrome awareness

I made these photos to raise awareness of Down syndrome #DownSyndrome

1 reaction
Post
This photo may contain sensitive content.

made some mermaid photos for down syndrome awareness

I made these photos to raise awareness of Down syndrome #DownSyndrome

Post

Special21 project

I am a Co-Founder of www.special21.org project which campaigns for the inclusion of Down Syndrome Elite Swimmers in the Paralympic Games.

Did you know that they are excluded ?

Join us in helping all those elite swimmers who train every day for their right to compete in future Paralympic Games.

Cyril Griffith

Homepage - Special 21

Post

I’m new here!

Hi, my name is Jessica Cossin.

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ADHD #crohn'sDisease #InterstitialCystitis #EatingDisorder #Insomnia Are some of the diagnoses I have received, most were made in my early 20's. Whenever I've had to get a new doctor, I want to collect all of my medical records, and one of those moving dollies that you use for heavy furniture; then stack all the files on it, and wheel it in with me, just for the effect. Also, to show that I've been through a lot, I won't stand for any of the bull that they may want to pull, so don't even try. I'm going to advocate for myself. I've obviously been chewed up & pooped out a few times by the medical industry. I've picked up on a few key things. 🙄 I have 4 kids, my 3rd has Down Syndrome @ 5 months she required open heart surgery. All of her hospital stays, surgeries, doctors, etc. have given me quite the experience with the medical industry as well. But, I have no idea how to get any services to help myself or my daughter, both of us are legally disabled. My husband is a truck driver, gone for 6 weeks, home for maybe 48 hrs. It's just me, no help. I'm a wreck. I've surpassed my mental point of no return . When husband comes home all he does is yell/snap at me that everything is a mess, not done the way he wanted it done, or he says, I just sleep all day. I honestly wish I could! I need to go, I've known that for awhile gg, but I can't afford any lawyers, nor to get a new place to live. The winters here are about 8 months & brutal. Heat is expensive, I am exhausted thinking about it.

(edited)
1 reaction
Post

Glimmers in a Not-So-Empty Nest

HELP!!!
what?
Help me, MOM!!!
what is it?
I need your HELP!!!
I’m coming!
EMERGENCEEEE!!!
WHAT? What? What’s wrong?
My eyes.
You hurt your eyes?
No, the sun is too bright: please close my shades.

Glimmers. Everywhere I turn these days, I keep hearing and reading about glimmers: those little experiences that bring you a sense of calm and peace. Small moments that turn a plain day or even a bad one into feelings of contentment.

Charlie, my 32-year old son with Down syndrome (DS), has just bamboozled me and sent me into a panic, racing up the steep, second-floor stairs, my chronic caregiver stress hormones rising exponentially. Truthfully, the art of bamboozling should not be a glimmer.

But it is.

As my heart rate slows, and I eye his one-sided smirk silently acknowledging that he knew all along what he was doing, the comedy of my life melts all sensations of stress and anxiety. My love for him fills me. I breathe in the fact that I am so lucky to have this man in my life.

Of course that is not what most people would think. In fact, parents of newborns often hear from the medical community, their friends and family members that their baby with DS will be a lifelong burden. I heard it three decades ago. And I still see people look at me sorrowfully, nod their heads and gasp: Oh dear, your child is going to live with you for the rest of your life!

And that thought pattern needs to stop. That attitude is outdated and only does a disservice to our whole society. The reality is that anyone can be or become a burden. Especially as we age.

But here’s what not everyone can be: a glimmer.

But Charlie can.

And lucky for us living in this not-so-empty nest, he is our daily dose of glimmers. I wish you could experience them as we do every day: the comments, the questions, the hugs, the back pats, the honest gratitude and unwavering love.

Big DooDoo (aka Dad), I love you.
Mom, let’s dance.
Percy (our family golden), you are my best friend.
Where’s my little sister? I need chocolate milk.
Hey, why you got to be so old?
Where’s Will? I miss him.
Thanks for my new pjs. They’re warm!
Let’s bake cookies.
Hurry up! Why you so slow?
Big DooDoo, buy more ice cream.
Mom, one more hug goodnight. And how bout a snack?

Clearly, my empty nest is different to one without a disabled individual living in it. My husband and I are not able to be as flexible. We do struggle to find alone time, and there are additional stressors: medical appointments, logistics, basic daily caregiving. And also true, I do occasionally pine for the quietude often found in an empty nest home.

But then Charlie suddenly pops in and provides a glimmer in my life: a moment of connection, reflection, humor, sass and love, bringing me feelings of peace and gratitude. And, therefore, one cannot tell me that growing old without glimmers is a better option. I simply don’t believe it.

I would take Charlie any day. For any day of my life. For my whole life.

7 reactions 1 comment