Angela Velasquez is a successful writer and blogger who spoke with the Children’s Tumor Foundation this July at the NF Summit about her journey living with NF1. Read a portion of this interview and watch her video below to learn more about Angela’s story.
ANGELA: My name is Angela Lucia Velasquez. I was born in Colombia, but I live in Florida.
CTF: Can you describe NF in three words?
ANGELA: Three is not enough, but: challenging, unique, journey.
CTF: Can you explain what you mean? How so?
ANGELA: Because being here at the NF Summit, I'm getting to know a lot of people. We have a lot of similarities, but at the same time, it's different. When you're talking to someone that has NF you realize, “Well, I have that symptom. No, I don't have that one.”
CTF: How do you make NF visible?
ANGELA: I'm myself. I make NF visible every day because I already have a facial difference, so whenever anyone asks me, “Why does your face look like that?” I take the moment to tell them, “Well, I have a genetic disorder. It's called neurofibromatosis, and it causes this, this, and this.” It's talking about it. It's not being afraid or hiding.
CTF: What kind of reactions and responses do you get from these people?
ANGELA: A lot of people tell me, “Wow, you're a superhero.” I'm like, “No, I'm not. I'm just living my life.” Or, “I look up to you. You're so strong.” I don't see it as being strong. I just see it as choosing to live my life this way.
CTF: Can you tell us why making NF visible is important?
ANGELA: I think it's important because we have a life and we have to live it, and if we don't talk about it, we're not giving ourselves the opportunity to live. Just like 30, 40 years ago, anybody that was born with a disability, they were shunned, placed at a home so society doesn't have to look at them. It's important to show up and to live and to tell the world, “Yes, I may look different, but I'm worthy of being here and living.”
CTF: Can you tell us a little bit more about your story?
ANGELA: So, my mom has NF. She's a spontaneous mutation, so I inherited it from her. I have another brother. We're three siblings, but only two of us have NF. My manifestation is more severe than my mom's and my brother's. In my case, when I was developing in utero, I also developed congenital glaucoma, which made my eye socket and my eye grow. I also have a bone deformity on the right side of my head and skull, so I've had multiple surgeries. I'm recovering now from a recent surgery that I had in January.
CTF: How long did it take to recover from these surgeries?
ANGELA: Oh, well, this is my most invasive surgery, and I had it six months ago, and I'm still recovering, and I still have quite a road ahead of me because what they did was change the titanium mesh that I've had since I was 17. They did a skin flap, so that's why my face is swollen and why I'm wearing a beanie because I'm still recovering from all of that.
CTF: What do you hope to see with NF research for the next 10 years?
ANGELA: I hope that whenever I say NF or neurofibromatosis, it's an everyday word and people know what it means, just like when you say cancer, everybody knows what cancer is. I want people to get to know what this is because it's a common condition. So many people have it. It's just that it varies between one person to another. I am hoping, 1. that everybody knows about it, and 2. we can have a cure because we need one, and I believe we can find one.
CTF: Is there anything else you want to say to us today?
ANGELA: Speak up. Don't be afraid to share your story. I share my story. I do my best to promote it and to spread love, self-love. I know it's difficult. It's difficult to live with this, but you can live with it.
CTF: How long have you been living with it?
ANGELA: 35 years, 23 surgeries. So… It's a journey.
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Angela spoke in-depth with the Children’s Tumor Foundation in an interview at the NF Summit. The NF Summit was held on July 21-24 in Chicago, IL. To enable closed captioning, click the CC button.
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