6 Ways to Live & Love (With Vitiligo)

Vitiligo

Several months ago, a young man emailed me completely flustered. He was in love. But Nana, his girlfriend, was pushing him away because she had Vitiligo. And it was killing him to be shut out. In fact, she thought she was doing him a favor. She did not want to relegate him a life of shame, living with someone whom all of society would shun. She loved him back, but she wanted to protect him.

As I read his email, I realized that he did not care whether or not Nana had Vitiligo. He didn’t care about society or what anyone would say about her. He just wanted to be with her.

He asked that I make a video filled with helpful advice, made just for her. So that she would not lock herself in her house all day. So that maybe someday she could hope for a happy life again.

How could I say no to that?

This is the video I made for Nana.

Here’s a friendly reminder to jump for joy EVERY day! Your skin, your physical appearance, does not define who you are, what you’re capable of, and frankly – how freaking amazing you are. Radiate positivity, and everyone around you will barely even notice the things you used to tell yourself were “imperfections”.

All my love,

Aruna

4 Ways to Detect “Vitiligo Treatment” Scams

Vitiligo

Nothing gets under my skin like people taking advantage of others. Unfortunately there are many fake vitiligo cures out there that, over time, have caught my eye. At first I’m always intrigued, but after doing some research it looks like there’s almost always something off about those “cures.” Even websites that claim to sell a natural treatment for vitiligo are often preying on the vulnerability of those who are eager to get rid of their white spots. Many natural remedies included in those systems are available for better prices elsewhere on the internet. So I decided to make a video giving 4 tips to help you figure out whether the vitiligo treatment you’re looking into is just a hoax:

Recap:

1. Does the vitiligo treatment sound too good to be true? It probably is. Keep in mind that this is one red flag of many, so if there are other red flags in addition to this one, you’ll want to steer clear!

2. Are the glowing testimonials about that treatment fake? It may not be immediately obvious, but if you review testimonials more than once you’ll start to see inconsistencies, or a lack of genuine tone, or something that just seems off. Testimonials can come in the form of comments, videos, blog posts, or even what seem to be reputable websites.

3. Does the vitiligo treatment cost an arm and a leg? More than $50? If you’re not speaking with a trusted source, like a doctor, in person – it’s a scam. I say that with 99.9% confidence. Of the things I’ve read and experienced, there is no one “cure” out there that is 100% guaranteed to cure ANY vitiligo on any person’s body. There are so many different types of vitiligo and everyone has different body chemistry. So it’s a guessing game. If you’re searching for the right treatment for you, expect to explore more than one option. This means, unless you have the resources, you probably don’t want to spend $500 per treatment. At least, I know I don’t!

4. Does the treatment or system consist only of herbal supplements? There has been a recent surge of websites that promote herbal systems to treat vitiligo. I’d be cautious about these. Do your research and see if you can get a higher quality herb elsewhere. Or perhaps they are charging you exorbitant amounts of money for an enticing vitiligo system that would cost much less if purchased elsewhere, sans the label slapped on.

The eBook I mentioned in the video is not a “cure” … just like my “vitiligo cure” video wasn’t a cure. But it definitely reveals interesting information about vitiligo, great healthy eating tips, and methods and resources for de-stressing.

As always, please don’t hesitate to be in touch! You can comment here, or tweet me @arunagee 🙂

Yours,

Aruna

Stress Reducing Heating Pad, and Paring Down Posting Frequency

Vitiligo

Well, it’s Friday! And I didn’t plan a post for today, mostly due to time constraint. So, today’s post gives me the perfect opportunity to announce my less frequent blog posting plans. Even after factoring in the time saving pre-scheduled posts I mentioned earlier this week, I still need to make more time for me (and my boyfriend and little doggies) during the week.

Going forward I plan to post a minimum of 3 times a week.

I have to admit that for some odd reason I am scared of posting less frequently. If it’s at all possible, I’ve become attached to my blogging schedule, the comfort of daily accomplishment, and the joy of exploration. I’m not sure what exactly I’m scared of, and I’m not sure what I’ll lose or miss. But I do know what I’ll gain, and what I could plan to do with some of that extra time (like make more videos, or go on more adventures).

And since my 3-times-a-week posting plan does not start until Monday, I decided to include an easy stress reducing tip. Stress is linked with vitiligo, which means minimizing stress is not just generally healthy : )

To reduce stress, I use a microwave heat pad for my body’s most stressed and sore spots! Here are some examples. There are hundreds, they are widely available, and they are relatively inexpensive. I use mine for my neck and shoulder muscles 3 times a day: every morning, when I get home from work, and before bed. Your most vulnerable spots may be completely different than mine, but heat therapy is sure to feel great and help easy any pain or tension. If you have tension like me, I hope this helps!

Yours,

Aruna

Massage Goodness on Vitiligo Friday

Vitiligo

This week has been tough. Sleep-wise. Luckily I scheduled a massage for today at Pyara Spa and Salon in Harvard Square.  I look forward to my massages with an amazing lady name Randy Sue all month. I have a membership with them for 30 minute elements massages once or twice a month, and I receive a discount. (Who doesn’t love discounts?)

Massages help me sleep better (time permitting – sigh!) and good sleep helps to keep my vitiligo from spreading. My body is frustratingly sensitive and over the course of even one week knots start to form in my back and neck area. By the time I make it to my appointment with Randy Sue, some of the knots grow to a substantial size. It’s a bit scary really.

Randy Sue and I asked someone to snap a photo of us. I have to apologize for the horrible image quality though. The lighting was unforgiving, and my iPhone does not take the best photos (as I learned at the Boston Wine Expo the weekend before last).

Randy Sue and Me
Me and Randy Sue

I have been going to Randy Sue for over 8 months. She has an intuitive technique. Her massages adapt to my needs, which can change from massage to massage.

Here’s her bio:

Education

Polarity Realization Institute in Ipswich, MA and have been practicing since 1999

Inspiration

Polarity is a hands on approach to the body’s energetic anatomy and seeks to bridge body, mind, and spirit. Polarity supports strong connections to my other healing and holistic health systems, making a great fit with Aveda. I work intuitively and with great respect towards the human body, creating a safe and healing space for each of my guests that I have the honor of working with.

If you’re ever in the Cambridge area and are wondering where to get a massage, I highly recommend Randy Sue! If you have vitiligo, or a sensitive body, get massages!!! Do it!

That’s all for today… *phew* Weekend! Weee!

Yours,

Aruna

Vitiligo Friday: Q & A

Vitiligo

Hey there! If you’ve been reading my blog regularly, you’ll know that I recently started a full time job. By recently, I mean this week. Needless to say, I’ve definitely been short on time. With the added responsibilities of dogs that are old and need lots of love and care, and other home tasks, I haven’t been able to film the video exposing a vitiligo scam, which I mentioned in last week’s Valentine’s post.

However, this week I will post a Q & A about vitliigo, for anyone who wants a quick run-down of the viti-basics.

Q: What is it?
A: Vitiligo is a mysterious loss of pigmentation in the skin. It is thought to be an autoimmune disorder, which means that the body attacks the skin cells that produce skin color, called melanocytes. Melanocytes produce melanin, the brown pigment in skin.

Q: Is it contagious?
A: No. Vitiligo is absolutely not contagious, but if someone with self diagnosed vitiligo actually had a skin fungal infection, that’s another story. That is why it is very important to go to a dermatologist as soon as possible for diagnosis. As far as I know skin fungus is curable; many believe vitiligo is not …

Q: Is vitiligo curable?
A: While there is no well known cure for vitiligo, there are many treatments – some better than others. Allopathic (western medicine) treatments include phototherapy, topical steroids in cream form, oral medication, skins grafts (ouch), melanocyte transplantation (different than skin grafting), and skin bleaching. However, any good doctor will admit that success rate for repigmentation is guess-work even in best case scenarios. A substantial number of people have turned to natural remedies, and they swear by certain healthy foods (green smoothies, spinach, vegetarian diet, less or no alcohol, less or no sugar, etc.), good sleep (which works for me – odd I know), herbal supplements (like ginkgo biloba), and stress reduction (yoga, meditation, massages, tea, breathing well, staying positive). I plan to do more research on this topic and will be posting about it soon. (Note: DO NOT BE SCAMMED BY “VILITIGO TREATMENT SYSTEMS!” Do thorough research. Hell, email me and we’ll look it up together. But be AWARE that there are many scams out there.)

Q: What causes vitiligo?
A: The cause is unknown, though at least the onset of vitiligo is believed to be specifically stress-linked. (In my case, it certainly was.) Some also believe that vitiligo is hereditary. If you have been diagnosed with vitiligo, do not let anyone tell you that you have not bathed properly or eaten well. Those potential causes have already been ruled out. As aforementioned, healthy eating, sleeping, and lifestyle choices could help in the process of repigmentation, but those factors do not necessarily cause the skin condition.

Q: What do I do if I think I have vitiligo?
A: Here is a video detailing what you should do if you think you have vitiligo:

Q: My friend or family member has vitiligo. How can I help?
A: Be understanding. Many people with vitiligo, especially in visible places, struggle with body image issues and social anxiety. People stare. Believe your friend when (s)he tells you this! Make sure you’re available to listen closely. Blowing off steam is the best way to healthily deal with the emotional pressure of judging eyes. Reassure your loved friend or family member that they are as wonderful as ever. A difference in skin hasn’t changed who they are, and they deserve to be happy. Connect them with resources! There are online forums where others with vitiligo can connect and talk about similar experiences. (see below)

Q: I have vitiligo. Please help!
A: Talk with friends and family, a lot. Fingers crossed they have friendly ears.If they don’t, find friends online through trusted sites. (But don’t give too much personal information!) Blow off steam, don’t keep it in! Vent away!! But also remember that the goal is not to run yourself into the ground with negative thoughts or to beat yourself up for something you didn’t choose to have. Make it your goal to be comfortable in public in your own skin, regardless of what others ask or do. You’ll find that your happy eyes and smiling face will pull positive people into your life.

Here is a short list of some online resources I have found:

http://www.vitiligofriends.org/
Connect with your fellow vitiligo friends on this site. Share your story. Talk with others. See and share photos.
http://www.uniquelybeautiful.net/
Scroll through this simple grid of photos of many people with vitiligo. You are not alone.
My YouTube channel
If you want to 🙂 I have several vitiligo videos and more to come.
www.YouTube.com
Seriously. Search “vitiligo story” or “my vitiligo.”
Remember, to take tips from people who look glowing and positive in their videos!
Learn more about vitiligo on Web MD
What are the risks (few), what is the latest medical knowledge, how many people have it, etc.?

If you struggle with people staring, watch this video:

If you are interested in having any kind of treatment, it’s good to research things like what type of vitiligo you have, and the kind of treatments that may be most effective for that type.

As always, feel free to contact me @arunagee on twitter, in a comment below, or by email at aruna (at) arunagee (dot) com.

Yours,

Aruna

Ginkgo Biloba and the Devil’s Spit

Vitiligo

I am becoming something of an herbal supplement junkie. Rest assured, I eat well, drink plenty of water, ingest the allotted amount of roughage and so on. Huge smoothie for breakfast, tea all day long, at least one salad daily …  I just happen to enjoy supplements as well. For example, I take Melatonin and Valerian root extract about an hour before the sleepy times. When I ran out of my Valerian extract this week, I rushed to GNC and went a bit overboard thanks to their buy one get one 50% off deal. In addition to Melatonin and Valerian, I decided to try Ginkgo Biloba and Green Tea Complex.

I have heard Ginkgo Biloba can be beneficial for vitiligo repigmentation, which is why it caught my eye on the store shelf. When I read the bottle I learned that it ,”may support mental sharpness.” (Double checked on WebMD.) Well – I’m sold.

photo(5)That’s not entirely true. I’m not *completely* sold. I am looking forward to trying it over the course of 100 days to test its effects, and if there is a noticeable difference I’ll repurchase.

The green tea complex (in liquid form) is horrible though. I’m calling it the Devil’s Spit from now on.

photo(4)I’m sure it’s healthy and all that; it has EGCG which, “supports metabolism.” But the stuff tastes horrible! If you’re considering buying this, don’t just try it in a bit of water. Add it to something strong to mask the disgusting taste. Honestly, I had such a jarring and unpleasant first experience that I will be returning this little package of delight to GNC today. I drink at least one glass of green tea every single day, so I don’t feel I’ll be missing out.

Haha! Sometimes I feel I’m turning into weird pill-lady. Any other health-goobers out there?

Yours,

Aruna

Song: Forgive Them Father by Lauren Hill

I need to start keeping track of the songs I’ve posted. I have a feeling I’m going to start repeating soon if I don’t 😛

Think You Have Vitiligo? … What next?!

Health, Vitiligo

I have a friend who contacted me recently to get advice about vitiligo. She noticed white spots on her chest and collarbone areas and wondered what it might be. I’m sure as vitiligo awareness grows, people who notice whites spots on their bodies might wonder what it is. So, I decided to make a video!

Yours,

Aruna

Melanocyte Transplantation

Vitiligo

A YouTube viewer asked me to research melanocyte transplantation a little while ago. So I did!

Melanocyte Transplantation is a vitiligo treatment that allows someone with stable vitiligo  (unchanging and unmoving) to undergo a 1-3 hour operation that would allow you to re-pigment your viti spots with your own, natural skin color. Of course, there are some risks involved, and there are different chances of success based on the type of vitiligo you have. I made a video summarizing the details:

I have not had the treatment myself. My vitiligo is not stable, though I have learned what triggers growth. But if I met the requirements and wanted treatment, I would definitely go for this one.

Yours,

Aruna

When People Stare at Your Vitiligo

Optimism, Vitiligo

Anyone with vitiligo in visible places can tell you that when people stare at our vitiligo it can have some pretty heavy emotional consequences. Of course, sometimes you get positive attention as well. The best way to balance things out is to learn to manage your feelings about the attention you get!

I have had vitiligo on my face for three and a half years. It started out as a spot on my chin, and soon I found that I had spots all over my face. I was like a dalmatian. Or a pinto 🙂 I got a lot of attention because of it. I would have preferred that people ask me about it and have an open conversation, but I’m sure they did not want to make me feel uncomfortable. Over the years, as my vitiligo changed I changed too. I learned to manage my feelings about my vitiligo and about the attention that people gave me. Now I just have a few spots on my face, and depending on how my hair is styled you sometimes can’t even see them, but people still drop their jaws at me every now and then.

I decided to make a video about what to do when people stare at your vitiligo because I have noticed that a lot of people with vitiligo hate their own skin. It makes me so sad. There are many beautiful things about vitiligo, and focusing on the positives at least helps to lessen any emotional hurt.

Thank you for reading and watching!

Yours,

Aruna

P.S. I’m working to improve my videos in general! I just got a new camera (early birthday gift) and I’m moving out of the Harvard dorms this weekend. So I hope to figure out a good location for better lighting!