Mom of three living with Neurofibromatosis

Charis Curbo was diagnosed with the complex disease more than a decade ago, and researchers at UT Southwestern have enrolled patients like her in a new clinical study. Read story

(Video opens with a shot of Charis Curbo, a Neurofibromatosis patient at UT Southwestern.)

Charis Curbo: It bothers me, but I have to not let it bother me.

Narrator: That’s not an easy task when living with a disease that’s untreatable. Dallas native, Charis Curbo, was twenty-six years old when she first experienced symptoms of Neurofibromatosis.

Curbo: It probably poked out like a quarter size on my side.

Narrator: A condition in which tumors grow in the nervous system causing “bumps” of various sizes to multiply on the body.

Curbo: As I got older, they started coming out more and they started bothering me more. I probably have thousands of them.

Narrator: A reality that has presented painful physical and emotional challenges over the past the decade. 

Curbo: I have people question me, ‘What is that?’ And I tell them what it is. But I guess its just self-confidence on certain stuff that I can wear and that I can’t wear.

Narrator: It’s one thing to overcome those daily struggles as an adult. But imagine having to explain to your 10-year-old daughter what’s happening to her skin.  

Curbo: I just don’t want her to go through what I’ve had to go through. My daughter is beautiful as it is. I just don’t want her to have to suffer with the bumps.

(Photos of Chairs and her daughter, Tinley.)

Narrator: Which is why Charis turned to UT Southwestern Medical Center to help researchers solve this medical mystery.

Curbo: It’s very important to me because if I can help someone else not get these, I’m on board.

Dr. Lu Le: These tumors are the greatest burden for these NF1 patients. Once they show up, they stay for life. Neurofibromotosis type 1 or NF 1 is a genetic condition where a patient with NF 1 have a change in a protein called NF one. This protein is considered a tumor suppressor gene. What it means is that it controls cell growth.

Narrator: Dr. Lu Le is a renowned Dermatologist and specializes in “NF”.

Dr. Le: UT Southwestern is an incredible place. We have specialists here who are knowledgeable, who can manage any complications that come with NF1.

Narrator: He says cases like Charis’ where tumors cover most of the body are common. One in 3,000 people are diagnosed with NF type 1 every year. With that diagnosis can come learning and neurological disabilities. And because it is a genetic condition, typically, when a parent has the disease, it can be passed down to his or her children.

Dr. Le: When Charis came and saw me in my neurofibromatosis clinic these tumors bothered her a lot and we enrolled her in the study to develop this special technique to remove many of these tumors.

Narrator: Right now, researchers are working to understand the biology of these complex tumors.  The only treatment is surgical removal. and though in most patients, these tumors are benign, 30 percent of NF patients develop cancer.

Dr. Le: The fact that there’s no medical treatment for many of the complications from NF1 that motivate all of us in the lab.

Narrator: Currently, Dr. LE is enrolling patients, like Charis, in a UT Southwestern study where a quick and robust surgical procedure removes multiple tumors at a time.

Dr. Le: We can quickly remove the top portion of the tumor and then remove the deeper portion of the tumor and then we would replace one stich to help the wound heal.

Narrator: After having more than four tumors removed by Dr. Le, it’s an option that Charis is grateful to have.

Curbo: I’d rather have a scar then a bump. Dr. Le has changed my life because of the fact that I can be who I am and go out in public and not be afraid to show what I have.

Narrator: Motivating words that drive Dr. Le and his lab to look for ways to combat this traumatic disease.

Dr. Le: We and many people around the world are working very hard to develop an effective therapy to prevent or slow these tumor growths.

Narrator: As for this hard-working and dedicated mom, she’s hoping to teach her kids a new meaning of strength.

(Photos of Curbo and her three kids.)

Curbo: I am a single mom of three kids and I have to be able to show them that I can overcome stuff and be proud of what you are. Don’t ever be ashamed of it.