Could you tell me about your creative background and love for fashion?
My mom was cleaning out our attic last year and she found this journal of mine called the “Future Me” journal. I flipped to the career section, and I had forgotten how as a kid I was determined to work in fashion. I’d always loved fashion, but I never really saw it as a career option; I never even knew it was possible.
At LIM College, I study Fashion Merchandising and complete my classes entirely online. I’ve learned over the years that I do best when I work for myself because I’m so self-motivated; I’m kind of lucky that way. I found I was doing better when I was on my own schedule and motivating myself, rather than having a class to report to every day. So that’s what I wanted to do with this business as well. I am the kind of person, that the kind of work I do needs purpose, and I thrive when I’m doing it for something bigger than myself. So I thought a lot about it, and I had the idea of doing a styling company, and all of a sudden I had this idea for doing it for Hydrocephalus research. It just didn’t feel right taking people’s money for my own personal gain, when there are far more pressing issues out there. And that’s how Aneka Scout Style + Design started.
I love that story about discovering that journal and reconnecting with that side of yourself.
The way I thought about it was, if something like this, like fashion, made me this happy when I was little, my most authentic and raw self, why did I ever stray away from that passion? It was a big, scary jump to go from a liberal arts, traditional education to a school exclusively focused on the business of fashion, but it’s been so worth it.
Could you tell me a little about your own battle with hydrocephalus?
In mid-December of 2018, I got an acceptance letter from my dream school, NYU, and committed. One week later, I turned 18 and became a legal adult. I also had been on antidepressants since the age of 13, but I felt so happy and content with my life that I started to go off of them. So within a week I became an adult, I committed to moving to New York City and attending NYU, went off antidepressants, and was put on oral contraceptives shortly after to treat menstrual cramps. 5 days later, I woke up in the emergency room with a neck brace on.
The shadowy figure of the doctor standing in the doorway is still an image I can never forget. She looked at my family and I and laid a heavy diagnosis on my young, innocent barely-eighteen year old body. I had Hydrocephalus, a lifelong, incurable brain disorder. Hydrocephalus is the unexplained overproduction of cerebrospinal fluid, and that extra fluid causes immense pressure on your brain. Most people live their lives never knowing what Hydrocephalus is, but even before my diagnosis I knew it all too well. Just two years before, my grandfather was diagnosed, and one of my cousins was diagnosed the following year. My great grandmother was a victim to this disease back in the 1980’s as well, yet there is currently no known genetic cause of Hydrocephalus. What didn’t make sense, though, was that cerebrospinal fluid builds up overtime, so Hydrocephalus has a slow onset. Yet for me, my life and physical state deteriorated in the matter of five days. Months later, my doctors were able to piece together the puzzle. I unknowingly had Hydrocephalus for months, but I simply attributed the cognitive decline and frequent headaches I was having to the stress of senior year. Then, when I started taking the oral contraceptive, I was affected by a very rare, but dangerous side effect called Pseudotumor Cerebri. Pseudotumor Cerebri is essentially when your brain thinks that there is a tumor, and it almost attacks itself. So when you take the elevated pressures from the Pseudotumor cerebri, and you add on the slow build up of pressure of Hydrocephalus, my brain simply gave up. I don’t remember much of the day I ended up in the hospital. All I know is I got home from school, and a few hours later my sister walked into our bathroom and found me face down on the floor, semi-conscious, with all the lights off and a wound on my forehead. I was rushed to the ER and they thought it was just a bad panic attack, since I had battled anxiety as a young child. I could not speak and I could not move for four hours; I was communicating with the doctors through squeezing hands. When I went for my first CAT scan ever, they told me I didn’t have a concussion, but instead had Hydrocephalus… As if that were much better.
The reason why research is so critical for hydrocephalus is because the only known treatment is a major brain surgery to implant a device that was invented 50 years ago: the VP shunt. The shunt has the highest failure rate of any surgical procedure in history, so much so that of all hydrocephalus surgeries, only 30% are the patients’ first one. 70% of them are repeat surgeries because of shunt malfunctions. And so that’s been my battle these past few years. I’ve had upwards of 20 shunt revisions, and I’ve had two surgeries, and it’s only been two years. It’s not unheard of to hear patients who have had 100+ Hydrocephalus surgeries in their lifetime.
The reason why it’s so hard to treat is because overall the medical costs for hydrocephalus in America are two billion dollars a year, but the National Institute of Health only invests eight million dollars a year in research. Most of the research that’s done with hydrocephalus is raised through private non-profits, such as the Hydrocephalus Association. They are the primary nexus for research for hydrocephalus right now; they’re the ones who are making the big strides. You would hope that it would be our health department or the CDC who would be treating this, but it’s really crowdsourced. So the reason why I wanted to do Aneka Scout was because I saw this major, major deficit in the amount of lives hydrocephalus impacts and the amount of attention that is given to it. And even then, hydrocephalus is so under researched and unknown. I can’t tell you how many times I’ve gone to my doctors and they shrug their shoulders and say: “there’s not enough information. There’s not enough research. We don’t know.”
How did you have the idea to start Aneka Scout Style and Design and combine your love for fashion with your desire to support people with chronic illnesses?
When I have intermittent pressure spikes— you have them also, but you don’t notice them because you don’t have hydrocephalus— I really feel it, because I already have too much pressure on my brain. They can sometimes be caused by hormonal imbalances and barometric pressure. So when it rains really hard or during my ovulation cycle I’ll have these pressure spikes, and on those days, I cannot get out of bed and I’m completely debilitated. Sometimes I have ended up in a wheelchair for a week, unable to walk. But something that I learned in these two years of having hydrocephalus and ten plus years I’ve had mental illness, is that when I get out of bed and I put on an outfit that makes me feel good, it’s like a whole new world for me. The reason why I started Aneka Scout is because I want to give people with chronic illnesses such as hydrocephalus, specifically depression, and anxiety, which are way more common, the opportunity to have even just one outfit that you put on and it makes you feel better. If you can trick your body into thinking that it’s a normal day and you put on real clothes, you put on makeup, you do your hair, it almost catches up. Because I know how difficult it is every day to battle chronic illness, I want to give them some sort of relief.
Aneka Scout offers a free express styling session. I do it mostly virtually right now, and even before covid I found it a lot easier to do virtually. I talk with the client; I find out what their needs are, they tell me “oh, I never wear green, but I love cap sleeves,” and I get an idea of what they want. I ask for every client to have a purpose. I then build a mood board and I source pieces from different designers that I find. I like to source mainly from smaller designers because I find that it’s much more sustainable and better quality. Specifically, I’ve been sourcing recently a lot from black-owned businesses, also LGBTQ businesses. Then, I send the pieces I chose to them and they pick out what they like and then I send the links. If anyone wants to compensate in any way, I ask that they redirect any funds that they would give to me for a styling session and put them towards the Hydrocephalus Association. It takes no energy from me. I love styling people. It gives me purpose in the day. So I don’t need to be paid for this. This just makes me happy. I would much rather have this money go towards changing lives.
I have some exciting ideas that I’m going to be launching soon. I’m thinking about doing a fashion hotline. I can do a quick little styling session, almost like a 911 for fashion emergencies.
What does it mean for you to be powerful?
My biggest strength is the fact that even with everything I’ve been through, everything I’ve seen, I have faced every challenge with grace and humility. I get that from my mom. Throughout this I have handled a lot and I have handled more than most people do in their first 20 years their life. The fact that I’ve made it out: that’s my strength. I was in a women’s support group for a while and the group leader looked at me and said, “after everything that you’ve gone through, with the way that you handled it, there’s no way that you cannot say that you don’t have strength.” I think about what she said all the time. And that’s really what makes me feel powerful, is the fact that at this point in my life, I can handle anything.