Patient Stories#01 - Vitiligo

Story from Nav Neeta, an Indian man with Vitiligo, published 4 years ago on Quora.

Story link - https://qr.ae/pKtXFt

Profile link - https://www.quora.com/profile/Nav-Neeta

Guys, grab your popcorn, Let's dive in!

"May 1995 - The first time my grandma discovered pale white patches on my ankles. While my mom tried to discard granny's concerns citing that they may be due to growth spurt, granny remained adamant that these were something else.

Fast forward 2 weeks, and the pale white patches had grown whiter, and my parents were now concerned. They swiftly found a dermatologist nearby who diagnosed the patches to be Leukoderma, or what we know today as Vitiligo.

I was given a few oral pills and a local gel that had to be taken/applied and the white patches had to be then exposed to sunlight for a few minutes. Everyday.

1996 - Even after continuing the treatment for over a year, instead of declining, the Vitiligo seemed to be slowly spread towards my knees and elbows.

So, we swiftly changed to Homeopathy. And the hack that homeopathy is, it had absolutely zero effect on the skin condition; in fact, it seemed to aggravate the condition, and by the end of 1997, Vitiligo had spread to my arms, legs and face.

1998 - We then tried Naturopathy (another hack to be honest) and everything that every Tom, Dick and Harry on the street suggested to my folks, but it wasn't until 1999, that we met with a very well-known dermatologist in Mumbai, who was known to have consulted and treated a number of movie stars, including Madhuri Dixit and Shah Rukh Khan. It was with this doctor’s treatment that my Vitiligo was brought under control for about 4 years, though we had to switch between different medications and treatments during these 4 years.

However, after sometime, even these medications stopped helping and my Vitiligo was back to its original strength.

2003 - For the next 3–4 years, I tried Ayurveda treatments under different doctors, but with almost no affect or help.

2008 - I then switched to Allopathy again. With the rapid advance of my condition, the doctor prescribed steroid and PUVA therapy, which helped control and reduce the spread of Vitiligo to certain extent.

However, the steroids had side-effects including weight-gain, swelling in legs and back, reduced immune system. At 26, I felt like a 50-year-old.

2010 - Somewhere during this time, I decided to pursue my Masters in Germany. It was during this time that I decided to stop all medications for Vitiligo.

It had been almost 15 years, and with several rounds of medications, so much that sometimes the number of medicines exceeded the amount of food on my plate, instead of any improvement my health had deteriorated.

It has been almost 8 years since then. Today more than half of my body is covered in white patches. However, physically and mentally, I am more stable today than I ever was during the so-called treatment period. The day I stopped considering Vitiligo to be a major part of my life, everything became easier to handle.

My health improved substantially. Relationships that were strong and true, stood the test of time, and grew stronger and healthier. I could concentrate on other aspects of my life e.g., hobbies, traveling, yoga. I could rebuild a new life from scratch.

So yes, I have Vitiligo, but I also have loving and caring parents, an amazing partner, an adorable toddler, a good job, great friends; to sum it up, I lead a happy life.

Vitiligo is indeed a part of my life and it may be so until I die yet Vitiligo is not the center of my universe. The center of my universe is my family." - Nav Neeta

You’ve read about a man born normal, then all of a sudden started to suffer from an incurable medical condition called vitiligo which in turn affected his appearance, self-esteem, physical and mental health.

Encouragingly, he was able to make peace with it and now lead a successful life.

AN OVERVIEW OF VITILIGO

Vitiligo is a chronic disease that is characterized by the death of pigment-producing cells in the skin leading to presence of irregular creamy/ milky-white patches of skin on any part of the body that get bigger with time.

This condition cannot be cured but can be treated to reduce effects and it often lasts life-long but is not life-threatening in any way. Vitiligo shows signs such as patches of discolored skin on several parts of the body including the genitals, loss of lining tissue color and premature graying of hair on scalp, around eyes or beard. It is also important to note that vitiligo is non-contagious.

Vitiligo can be caused by family inheritance, a stressful event such as contact with a chemical or sunburns as well as an immune system disorder. Vitiligo cannot be cured because it is a mystery to doctors on how it can be averted seeing as it shouldn’t occur.

Patients with vitiligo often face social distress, self- esteem dilemmas, eye problems, sunburns and occasionally loss of hearing. Vitiligo continues to gain awareness as more cases are arising and research hopes to discover a breakthrough in curing this disorder soon.

In the meantime, patients with vitiligo have been encouraged to use effect-lessening treatments, live their lives happily, and express themselves as much as they can to avoid social stigmatization.

I even see some individuals with vitiligo turning their patches to spots for impressive make-up art on their skin, I find them very pretty.

As normal individuals, we must ensure those with vitiligo do not feel less by engaging with them normally; they are not abnormal, only victims of a skin-disorder.

Did you know about this disease prior to reading this article or have you come across someone with vitiligo before?

Do tell in the comments section, spread the awareness for vitiligo as well!

Thanks for reading, have a great week!