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Genetic Disorders

Raising A Daughter With Down Syndrome Makes Me Dream Of A More Inclusive Society

Rémy Bellet | Posted 06.16.2016 | Parents
Rémy Bellet

It will not be an easy task to change people's views of all the little Louises of the world, or of anyone who's different and wishes that their difference wouldn't define their life.

Can You Take One Small Step?

Siobhan Kukolic | Posted 05.19.2016 | Impact
Siobhan Kukolic

For the last ten years, my friends Keegan and Tanya have been fighting tirelessly to raise funds for and awareness about Prader-Willi Syndrome. One of the many issues that goes along with this disorder is never-ending hunger.

Non-Invasive Prenatal Testing (NIPT): A False Positive Story

Mischa Livingstone | Posted 04.15.2016 | Parents
Mischa Livingstone

Throughout this ordeal we learned of a whole new type of sorrow (who knew there were so many different types of pain?), but also a whole new type of appreciation and love for one another, and for the child my wife is busily building.

New Gene Therapy Lights up Vision

Medical Discovery News | Posted 03.15.2016 | Science
Medical Discovery News

The treatment may be approved this year, but many people won't be able to afford the $100,000 cost. Still, we're excited this gene therapy works and this approach could benefit other genetic vision disorders.

Planned Parenthood Made Our Family Possible, And We Aren't Even Patients

Matt Uffalussy | Posted 12.07.2015 | Politics
Matt Uffalussy

My wife and I were not patients at Planned Parenthood while we sought to build our family. But it is the kind of services that Planned Parenthood provides -- and legislation that Planned Parenthood helps lobby for  -- that allowed us to have our child safely and healthy.

How My Cousin With Rett Syndrome Found Her Voice and Made a Difference

Berni Barta | Posted 10.27.2015 | Impact
Berni Barta

My cousin is a leader, championing the cause to find a cure for Rett Syndrome. She is a role model, inspiring girls everywhere with her wisdom and perseverance. She is, to put it simply, a butterfly.

My Children Have a Rare Disease and I Need to Take Action!

Alexis Buryk | Posted 06.02.2016 | Impact
Alexis Buryk

It really has been only six months since I found out that my 26-year-old fraternal twin daughters, Katie and Allie, have Late Onset Tay-Sachs (LOTS). ...

The Cold Reality That's Set In After Last Year's Ice Bucket Challenge

Dawn Q Landau | Posted 06.13.2015 | Fifty
Dawn Q Landau

While ALS has certainly gotten so much more focus than it would have otherwise, now that all the ice buckets from all the ice-bucket challenges have been emptied, those on the front line are still suffering, with too little funding and often with little company.

February 28, 2015 Is Rare Disease Day

Alexis Buryk | Posted 04.29.2015 | Impact
Alexis Buryk

And how do I know that? My 26-year-old fraternal twin daughters were diagnosed with Late Onset Tay-Sachs this past November.

The Day We Were Told Not To Have More Children

Heather Lens | Posted 12.16.2014 | Parents
Heather Lens

Irresponsible. What did he mean? He didn't say that we were physically unable to have kids. He said that if we chose to, we would be irresponsible.

How My Son Showed Me A Depth I Didn't Know I Had

Posted 03.13.2015 | OWN

As a young man, writer Hamilton Cain loved his freewheeling, fun-filled life. But when the birth of his first son brought unimagined challenges, he fo...

Just One of the Girls

Wendy Ferguson | Posted 08.26.2014 | Parents
Wendy Ferguson

For all of Abby's 9 years, I admit that I have been a very protective parent. Even before we knew she had special needs, let alone a terminal illness, I found myself trying to protect her from actual and perceived dangers.

My Greatest Sorrow Is My Greatest Joy

Wendy Ferguson | Posted 08.02.2014 | Parents
Wendy Ferguson

She's dying. My 9-year-old daughter is dying. Today I can say it without crying, but not necessarily tomorrow.

I Made This Baby

Suzanne Perryman | Posted 04.30.2014 | Parents
Suzanne Perryman

We never planned to have more kids, but we were so happy as a family, we never really planned not to.

My Experience With Rett Syndrome

Gaby Valner | Posted 02.05.2014 | Healthy Living
Gaby Valner

Although intellectually and conversationally the doors have been unlocked, there are still so many things I struggle with. Even typing this speech has taken days to get this far and will take several days more to complete, typing literally one letter at a time with my right pointer finger.

How Much Do You Want to Know About Your Unborn Child's DNA?

Kyle Koeppel | Posted 10.08.2013 | Healthy Living
Kyle Koeppel

I personally would not select out or abort a fetus because it tested positive for Lynch Syndrome. I find it ironic that a living person has to wait until the age of 18 to have genetic testing, but an unborn child's parents can determine whether or not the child has Lynch Syndrome before birth.

Prenatal Testing: It's Just Information, Not Answers -- or a Guarantee

Claire McCarthy, M.D. | Posted 07.16.2013 | Parents
Claire McCarthy, M.D.

The pace of genetic research is stunning and exciting. But there is more to life and health than genetics.

Maximize Your Disabled Child's Government Aid

Jason Alderman | Posted 05.27.2013 | Business
Jason Alderman

Parents of special needs children have enough on their plates just tending to the needs of their kids. So it's not surprising that many of these parents haven't had time to hatch a long-term financial plan in case their kids need care after they're not around.

Amazing Little Girl Helps Homeless On Way To Chemo Every Week

Posted 03.05.2013 | Impact

Ella Wilson makes a special stop on her way to chemotherapy every Thursday. The 6-year-old who has neurofibromatosis, a genetic disorder in which n...

A Mother's Journey From 'What Ifs' to 'What Is'

Jennifer Peruso | Posted 07.10.2012 | Parents
Jennifer Peruso

It was agonizing to see his tiny body fighting so hard for survival. He could have fit in the palm of my hand, yet I wasn't allowed to hold him. I instantly knew his fight would become mine.

Scientists Find Gene For Common Skin Disorder

Posted 04.23.2012 | Science

By: MyHealthNewsDaily Staff Published: 04/23/2012 01:37 PM EDT on MyHealthNewsDaily Researchers say they have identified a gene linked to the mo...

UConn's Role in Shaping the Future of Medicine

Susan Herbst | Posted 05.23.2012 | College
Susan Herbst

"Personalized medicine" is opening the door to a whole new world of medical care -- one that would offer a tailor-made approach to treating and preventing health problems in individual patients.

Watch: AMAZING 'Cyclops' Shark Discovered

The Huffington Post | Mark Hanrahan | Posted 12.18.2011 | Green

A one-eyed 'cyclops' shark fetus discovered in July is the real thing, according to scientists. The animal was discovered inside its mother, a dusk...

Finding Financial Aid for Special Needs Children

Jason Alderman | Posted 11.17.2011 | Healthy Living
Jason Alderman

Fortunately, many government programs and community resources are available to help relieve the financial burden of parenting special needs children.