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On Thursday, May 6, Oprah did a segment on Ana Rodarte, a young woman who lives with neurofibromatosis.  Below the Foundation shares thoughts on the segment: 

As May is NF Awareness Month, we were excited to learn that the Oprah show was using its platform to advance awareness of NF.  After watching the program we were disappointed that the segment “Overcoming Obstacles” featuring Ana Rodarte, did not accurately portray the disorder.

Both Oprah and Ana incorrectly focused on the “Elephant’s Man Disease,” stating this term is “offensive to those living with NF.”  It is important to understand that Joseph Merrick, a man who was unfortunately derogatively referred to as the “Elephant Man,” did not actually have neurofibromatosis.  Instead, Merrick had a genetic condition causing the overgrowth of some parts of his body known as Proteus syndrome.  It is unfortunate that this inaccuracy was such a central focus of the show.  Proteus syndrome affects people in a different way and is in no way the same as NF.

Further, it is important to remember that Ana’s situation is rare and represents a severe example of NF type 1.  In reality, most people living with NF do not experience the degree of deformity Ana lives with on a daily basis and never will.  If you are a parent dealing with a new diagnosis of your child, please understand that Ana is an extreme situation.  In fact, many children living with NF look no different than their peers and will never face the ridicule that Ana shares in her story.  It is also worth noting that children born with NF in the United States will receive a much higher quality of care than was avaliable to Ana in her youth, and severe cases like hers will benefit from earlier intervention and enhanced surgical techniques available here. 

It is also important to understand that neurofibromatosis is not always inherited from a parent.  When asked about the genetics of NF, Dr. Batra (a plastic surgeon) provided inaccurate information.  To clarify, many people living with NF are the only people in their families affected.  NF is caused by a change in a specific gene.  This gene change can sometimes be inherited by a parent, or it can just happen by chance with no reason.  For those who live with NF, they have a 50% chance to pass the NF onto a child.  Ana shares she “doesn’t want to have children because she doesn’t want to pass on the disease.”  In reality, there are various reproductive options available to potential parents living with NF that ensure it is not passed down to any of their children.   A genetic counselor is an allied healthcare professional who is best equipped to discuss these issues with families who are concerned about passing NF on to a future child. 

Lastly NF is not a disease, as it is repeatedly referred to in the program, NF is a disorder.  A person with a disease feels ill, whereas a person with a disorder may or may not experience medical problems.  People contract a disease, people are born with a disorder. 

We appreciate Oprah's efforts to demonstrate the incredible courage of the human spirit.   Ana is a great example of this, but the show did not accurately portray NF.  As Ana herself mentioned, she wanted to share her story to let people know there is “help” and we commend her for her bravery.  However, we hope that in the future Oprah will use her platform to more accurately portray the struggles of the many people who live with NF and the many different manifestations the disorder may have.