Hope for Kids with Amniotic Bands Syndrome

Advances in Technology Have Helped Patients Beat the Rare Condition

06.21.13 | By Jennifer Wall

Dean Kamen, a great scientist and inventor, said that “we now live in a world where technology, in many ways, has triumphed over death.”  As we look at the bigger picture around the value of innovation, particularly in a cost-containment environment, we must always keep this triumph in the back of our minds. 
 
The good news is that advances in technology have not only helped patients beat deadly diseases, it has also provided hope for patients living with debilitating conditions.  For example, NPR this week highlighted the fact that 3-D printers can now be programmed to help create mechanical hands for patients who are missing fingers. 
 
This couldn’t be better news for Americans who have faced amputations, including thousands of children suffering from a rare condition called amniotic bands syndrome.  Why? It provides new hope that they can live normal, productive lives – and offers a chance for them to participate in activities that they once thought would be impossible. 
 
Amniotic bands syndrome (ABS) is a congenital disorder caused by entrapment of fetal parts (usually limbs, fingers) in fibrous amniotic bands while in utero.  Many scientists believe that ABS occurs when there is a partial rupture of the amniotic sac that could result in fibrous bands wrapping around fingers and other body parts. 
 
I had never heard of ABS until a few weeks ago, when my neighbor gave birth to her adorable son.  Shortly after, her husband noticed something wrong with his fingers.  It was later discovered that he was one of approximately 1,200 babies born each year in the U.S. diagnosed with this rare and debilitating condition. 
 
As you can imagine, the news was equally devastating and shocking.  He lost half his thumb and will most likely lose at least half of his other two fingers on his left hand.  
 
This new technology represents an important innovation milestone for mothers with children who lost fingers to ABS.  And it helps raise awareness of a condition that many mothers, myself included, hadn't heard of. 
 
Because of this, each time I go in for my sonogram appointment, I ask whether or not they see little bands in the amniotic fluid.  Perhaps it's a bit paranoid, but this news has empowered me to ask more informed medical questions about the health of my future children. 
 
Stories like this constantly remind me of the important work that the industry I represent does to also help advance innovation so that patients suffering from disease, including rare conditions, can lead healthier and more productive lives.  Though we say it often, it isn’t just a generic line without meaning.  It is what inspires us to do a better job of telling the industry’s story about research, progress and hope. 

Comments

Hide Comments

More On PhRMA — powered by PhRMApedia