Throughout my entire life, I’ve personally made friends with four people with vitiligo. Four may not seem like very many to the average person; but to me, even seeing one other person with vitiligo sends a jolt of excitement and surprise through my stomach. It’s amazing that although vitiligo impacts around 1% of the population (upwards of 75 million people), I’ve been fortunate enough to meet others that have undergone similar experiences to me. Each time I’m surprised because as humans, we so often compartmentalize ourselves and see how we’re different from one another. Meeting these individuals allowed me to see similarities, and bond with people who struggle with the same condition I do. Another benefit of meeting others with vitiligo, was that we were able to exchange coping mechanisms and different strategies for treatments. My dad and I learned about two distinct treatments that had shown improvement for these peers – eyelash solution and gluten-free dieting. 

In the third grade, one of my classmates had small white patches on her feet. She had used a solution that people use to lengthen their eyelashes on her spots and seen improvement. I was initially very confused how an eyelash treatment would produce dark pigmentation on the skin; nonetheless, my dad researched the brand and surprisingly found that other people had also found improvements in their vitiligo with this cosmetic treatment. So, he mass ordered boxes of the eyelash solution from India. To apply it, I would take the eyelash brush and rub it on the spots around my eyes and lips. We started with spots on the face, as the skin is more sensitive and vulnerable to change, and gradually started applying to my hands and feet. We did not do this under supervision of a doctor. There were no negative outcomes from this experiment, nor improvements. 

Our second home experiment was going gluten-free. My dad’s colleague had gone on this diet for medical reasons, and happily discovered that after going gluten-free for three months, ALL of her vitiligo went away. When I first learned about this, I was ecstatic. Immediately, I cut out all things wheat from my diet, and bought a surplus of gluten-free pastas, rice snacks, and extra vegetables to see if this diet would work for me. I was very strict about the diet for over two months, and I even lost a few pounds. Overall, I felt better and more energized too. My vitiligo remained stagnant. As I’m writing this blog, I am gluten-free again. There has been no marked improvement from the gluten-free diet in regards to my vitiligo yet, but hopefully with time, there will be. It’s become a good lifestyle, and I’ve found proper substitutes for breads and pastas and such. 

Unfortunately, these little projects, such as the eyelash solution and the diet have not produced any improvement for me as they have others. This just goes to show that all bodies work differently, and what may worm for someone else may not work for you. Naturally, it can be upsetting and hard to stay motivated at times – but it’s important to keep working hard and try all these little treatments and experiments. You never know when something COULD work, and you’ll never know if you never try.

While we did see minimal progress with the bagchi oil treatment, traveling between the US and India for long periods of time was hardly feasible. Thus, we sought out to create a light/UV apparatus at home to replace the bright India sun. My grandpa and dad located a rusted, over-sized light bulb with intense radiation, which must’ve been from no earlier than the 1950s. Despite it’s bent metal covering and wobbly handles, the bulb was immensely powerful and bright – to me, it seemed brighter and hotter than the Indian sun! Every night, I would hold the bulb inches from my white skin (rubbed with bagchi oil) for up to ten minutes. It was a time-consuming and sometimes painful process, as my skin often brimmed the edge of boiling and blistering.

Luckily, in 7th grade, my dad had contacted a new specialist at Bellevue Dermatology. We met with the dermatologist, who introduced us to the lightbox. This colossal machine was the size of a shower stall, lined with 32 ceiling-height light bulbs along the perimeter. The machine had a large door, which swung open to reveal a small stool inside. The doctor explained that the patient would stand inside the lightbox, with all the bulbs turned on and hot, for increasing increments of time. This treatment had very similar objectives as the bagchi oil in the sunlight, but it was just industrialized and used lotion in lieu of bagchi oil. Thus, my dad picked me up every Tuesday and Thursday after school and took me to Bellevue Dermatology to use their lightbox. I distinctly remember the dichotomy of emotions I felt just before climbing into the machine for the first time – excited with hope, yet wobbly with pangs of nervousness jolting through my stomach. The lightbox was daunting in figure and it sometimes took me ten minutes just to step inside. Though I’d consistently place on the leader board for balance beam in gymnastics meets, I could never stand still on the big stool in the lightbox, and feared the day when I would fall over and burn myself on the scorching hot light bulbs. I also had to wear swimming goggles with a special UV ray protective covering so that I could open my eyes inside the machine without going blind. Not that I ever would open my eyes – I’d scrunch them closed so tight as if to avoid losing balance. Sometimes I’d start crying and whining for the nurses to pause the lightbox so I could take a breather.

The process wasn’t traumatic forever, though. After numerous sessions, I got used to standing still in the machine for up to five minutes; nonetheless, I’d still make my mom or dad stand outside the little peep window so I would stay calm. As I habituated the process, I even turned it into a game. I’d try and guess how much time I had left, as they had a little timer on the outside which only my mom and the doctors could see. They would always announce when I had ten seconds left, and I’d enthusiastically count down and scream once the timer beeped, celebrating as if it was New Years. We also started applying the bagchi oil to my spots instead of lotion to see if that would expedite the results. With each appointment, we would see the white skin on my knees and my lips transforming into a bright red color, just teasing the line between red and burning, which was the goal. 

After some months of sessions, my dad eventually decided to buy our own lightbox for the house. Each session at the doctor was very expensive, and since we were likely going to utilize the lightbox long term (I even still use it today, five years later… but more on that later), he decided buying the machine would make more sense. Thus, we had our own giant lightbox in the media room – a “great” conversation starter for when friends came over. It would soon be in use every other day, for up to 30 minutes. To pass the time, I usually put on Jessie or Austin & Ally and have my dad sit on the couch while I stood in the light box for the entire episode. Eventually, my dad didn’t have to sit there anymore, and I could proudly conduct the whole process independently. Granted, I went through phases of lying and pretending to do the treatment even when I didn’t. Naturally, it got exhausting. I was tired. I got burned. I even had to wear a thick ski mask to avoid burning my brown cheeks, but still get light rays to the white skin on my eyes and mouth. Despite this painful, long process, I always managed to pull myself back together.  It makes me proud to see how I’ve grown with this treatment and learned how to overcome fear and mental blocks.

conclusion

Overall, we did see some progress. As my red and sometimes burnt skin returned to normal texture and color, of course, with the use of bottles upon bottles of Aloe Vera and Burn Gel, often little brown dots would appear across my white skin, especially visible on my knees and armpits. Overall, the biggest benefit from light therapy treatment was the stagnancy created in my skin; while the white patches of skin did not shrink, they did not grow significantly larger or spread to other limbs. I continue to use this machine occasionally today, as we still try out different combinations of treatments and ointments with the intense UV lights. This machine was also encouraged by my future Doctors at the Henry Ford Hospital in Detroit, which will be discussed in my next blog!