Thank You, NYC Support Group and Contact

Thank you to everyone who has visited the site. In less than a month, people from 11 different countries have visited and read the site. Looking at the blog stats makes me thankful and excited to be part of this community. Moving forward, I will only plan to blog for periodic updates to let you know how I'm doing.

I am also looking into starting an in-person vitiligo support group for the NYC Metro area. Feel free to e-mail me (deadseavitiligo@gmail.com) if you are interested or might know of anyone interested. It would be great to connect regardless of your interest level. Also, if you happen to have any questions about my experiences or my blogging, feel free to contact me here as well. I am also extremely open to suggestions on content for future blog posts. If you have a question, others will likely have the same one and it would be great to share with the rest of the community.

Back in the US - Start of Home Phototherapy Treatment

I've arrived safely back in the US now and have started my phototherapy treatment phase. My doctor wants me to do whole body pseudocatalase application twice a day as well as phototherapy treatment twice for the first month back. Then, for 2 months she wants me to change the phototherapy to once a day. I have to say this is quite time intensive but is slowly becoming the new normal.

I purchased out of pocket a phototherapy unit (prescription required) from uv biotek(http://www.uvbiotek.com/patients/pa100unit/). Contrary to their website, I believe it is highly unlikely that insurance plans will assist in payment, but I hope I'm wrong. I have to say my apartment is small and it barely fits the unit's height. It is very heavy and I had to do a customized wall mount install to keep it in place. UV Biotek provided a free unit stand but there is not enough clearance for me to use it.

My experience with UV Biotek was both good and bad. It was great through the sales process but then as I was arranging for the shipping date and unit final install through phone, it was a ghost town. Since you have to call them to activate the unit (you need prescribed doses), you have to call them. When I called person X on Friday, she said I could not install it until Tuesday because a necessary warehouse person was unavailable, whom she needed info from. Thankfully, another employee helped correct the situation, which was a pleasant, but unexpected surprise. I was disappointed in the customer service on the back end for an appliance as major (and not cheap) as this.

In terms of treatment details, I do it once in the morning and once before I sleep. It may take 25 minutes total to do each treatment right now. Perhaps I can get faster. I was told to do treatments on my face fully and lower arms/hands fully clothed then without clothes for the rest of my body (while covering the head). Since you have to go through the different sides of the body and also reset the unit timer, it takes time. After this month, hopefully it will be an easier process since I will only have to do it once a day.

I am also trying to take pictures, likely on a weekly basis to see progress.

Day 21 - My Version of Melanogenesis and Jerusalem

My non-physician/research scientist version of meleanogenesis:

1. Skin around spot turns a little tan

2. Spot turns a little pink

3. Very thing, slight white interface develops between the tan spot and the white spot

4. The melanin surrounding the white spot becomes slightly darker/active

5. A small dot forms between this interface

By the way, this process takes weeks if not months for even a spot to form. So, we’re talking years before start discussing possible larger repigmentation. After speaking with another traveler, he said he saw the most effect after 3 or 4 years, but ultimately did this treatment for, I believe, 6 years total. He went from 80% depigmentation to probably 10-15% is my guess during this time. Make sure, when we discuss this treatment style, that generally it is discussed in the units of months and years not days and weeks. I also say this to address that secret, inner desire/hope found in folks with vitiligo: 1) for full repigmentation and 2) for it to happen extremely quickly. Unfortunately, that is not the current reality at this time. Hopefully though it can and will be in our lifetimes, given enough attention, devotion to research, effectiveness of treatment, and acceptance by the healthcare and pharmaceutical industry.

I was able to make an essentially 24 hour trip to Jerusalem. It was a great trip. Though slightly challenging to get into Israel, it was worth it. Instead, I did not do a full morning and afternoon tanning session but just did a morning one. The doctor said it should be okay, especially having basically finished my treatment plan. I also plan to do an afternoon one tomorrow upon returning. In any case, while crossing the border, there’s obviously security and the border control agents ask a lot of questions (I have US citizenship by the way). My best suggestion is to be prepared to talk about what you’re going to and have any evidence of tickets or reservations in case they ask for it. Some people may find all of these questions extremely annoying and bothersome but I understand why they do it. This is a volatile, religious region that demands high security measures. I was probably asked 15 questions and I believe it was for two reasons: 1) to give them time to look at me to see if my identification matched up with my appearance (the agent probably looked at me 15 different times to ensure this was true) and 2) to read my demeanor to see if I was lying or not. Their job is to basically read people. I’m pretty sure almost all average travelers will get in, but will be given a range of hard questions to get through.

Day 20 - Reflection, Mud, and Jerusalem

Day 20 is in the books. Today made me reflect a bit on the overall treatment. I actually looked at some of the best case pictures of previous patients that have undergone this treatment and I don't have the level of repigmentation that they have in the face. I also don't have as much on the face. I know that the face is the fastest to repigment but I have some melanin in other areas, which is an encouraging sign. I mean, it's definitely small spots, but it's a starting point for the treatment I still need to undergo when I'm back home. Today was also the coldest it has ever been in the morning. When I came out of the water, I was shivering. The afternoon was better but there was a light wind today that nullifies the heat of the sun.

Since I'm drawing near to the end, I also decided to put on the mud from the Dead Sea all over my body. It definitely smells a little stony and tastes very salty. I think it's the solid version of what I do when I get in the water. It's a little difficult to get off but I managed.

Tomorrow is a 1 night trip to Jerusalem. It's a little complicated going through the Hussein/Allenby Bridge in some ways, but it's the closest. Looking forward to the Via Dolorosa, the Four Quarters, the Temple Mount, and possibly Bethlehem.

Day 19 - What You Get With a Stay at the Dead Sea Spa Hotel and Brief Treatment Thoughts

For those who will be or are considering coming to the Dead Sea Spa Hotel, I wanted to include a few particulars on what you will get when you decide to stay here (or not).

What you will get from a room in the newer building (I can't speak of the older bungalow units)
-safe in your room for valuables
-small refrigerator
-a hair dryer
-balcony with chairs and a space to hang laundry
-a bathtub with an extendable clotheline
-a tv with a fair amount of channels and a DVD player
-an electric hot water kettle
-2 small water bottles daily (600 mL each)
-usually extremely slow internet (the average of the last 3 days has been a .07 Mbps download rate, painfully slow for most things)--to expect to be able to regularly watch videos from the internet is not realistic; at times it's surprisingly fast but it appears it is this way when they reset it and this is about only 5% of the time. Skype calls are usually just okay or just in and out--it's very unpredictable.
-a breakfast and dinner buffet (drinks are included for breakfast but not for dinner)
-a pretty nice, newly renovated gym
-a gift shop primarily with overpriced Dead Sea skin products
-unfortunately the food options are not so great for lunch: it's either the same restaurant as breakfast/dinner or a meal at the Sports Bar, Aqua Fun, or room service, which all more or less have the same menu. Lunch can also be had at a nearby hotel, which requires at least a 10 minute walk and could be really hot depending on the weather. I definitely recommend doing some light grocery shopping upon arrival for water, snacks and potential lunch items.

I also wanted to say something about other treatments I've come across online. Honestly, I believe most are crap. 98% of the things I've seen are unproven herbs and creams that people/companies are trying to pull on the hopes of vitiligo patients eager for a quick fix. It really upsets me when I think about people who are trying to scam others online for money. I know there's a lot of this out there and I think the anonymous internet world makes this so much easier to do. There's no sense of feeling bad of scamming someone when you don't interact with them in person (this is a whole other topic by the way). I'm not saying not to try something out, instead I think you should have realistic expectations. There are all these desires (for me, too) to see before and after pictures of skin lacking pigmentation and then after repigmenting. There's something in us that says this isn't right and this isn't the way things should be. But that's the way things are. The truth is that there is no quick fix, no cure and no standardized miracle out there for repigmentation. Easier said than done, but the more we accept this "new normal" and our new selves, embracing something that can make us uniquely compassionate individuals, the more we will begin to truly treat ourselves. It's amazing to experience the power of truly accepting yourself. It's something I'm working on every day. After all, it is truly the inner part of us--and really everyone with or without vitiligo--that needs healing. Let's get to work.

Day 18 - Exactness and Thoughts on Treatment Value

When I consider my next treatment session, I actually do consider a number of various factors, which include the following items below:

-Level of absolute pinkness of spots

-Level of relative pinkness of spots

-Angle at which the sun hits the spots

-Time of day

-Shade or no shade

-Level of visibility of spot/value to me

-Pain/itchiness, if any

-Body part (for example, hands and feet can take more vs. the face)

-Amount of hair cover on area

I try to consider and adjust accordingly, depending on how I feel. While I do state earlier that the treatment is not exact in many ways, I do try to listen to my body and understand what it is telling me.

If you're reading this now, you're probably considering coming to the Dead Sea for treatment for you or a family member or at least curious what it would be like. In my opinion, I don't think it is an absolute necessary to make. It seems like pseudocatalase and home light therapy works well on its own. But with my personality, I need to know that I'm doing everything possible that I can, even if the results may not match with my expectations. I think most people expect to see more immediate results at the end of the treatment here rather than waiting a few more months (if not longer) to see the full effect. As such, I'm pretty sure most people are disappointed in the Dead Sea treatment alone, which is understandable, given the intense time and money that you make to do this and also the impatience for fast results. It is not an easy treatment to do by any means. If you are not fully committed to this, it is probably not the best treatment plan for you. Though difficult, it's best to see this with a long view, to know this is not a stand alone treatment, but just the start of a longer journey. And it is really quite common for people to come back multiple times here in the future too. That being said, I'm glad I chose to do it even though I have yet to carry out the full treatment beyond the start here at the Dead Sea.

Day 17 - Weather and Sunbathing Must-Haves

The past two days have been the cloudiest in the past two weeks, which surprisingly, is not that cloudy. It's all relative as all this means is that I sometimes have to wait 5-10 minutes (gasp) for full, direct, non-cloud filtered sunlight. It's really amazing how quickly the weather has gotten cooler in the two weeks since I've been here. When I first arrived, the weather was typically a high of 95 Fahrenheit (35 Celsius) and a low of 80 Fahrenheit (27 Celsius). Now it's a high of 74 (23 Celsius) and a low of 55 (13 Celsius). It's much more pleasant now than it was before. I still have my sweat-drenched moments here in there while sunbathing but the cooler temperatures and a little more wind, it's pretty nice.

Regarding my must-haves for my twice daily sunbathing, here they are with a brief description of how I use it. These are my "office supplies" for my current job:

-krama: This is a Cambodian light scarf so I can cover myself when I go out or come back in for indoor decency purposes. It also gives me great eye coverage when I need to lay down with the sun directly overhead.
-pseudocatalase: Obviously, this is what I apply to my whole body before sunbathing. For those wondering, I would say you would 500mL, or 1 bottle, for about 25-30 days. I will definitely go through a whole bottle during my stay here.
-sun hat: This was more useful when it was hotter, but still gives me a nice shade if I want a little cooler feel.
-water bottle: I fill this 1 liter bottle with Gatorade powder also to give me some flavor and some extra electrolytes to expedite the hydration process.
-portable electric fan: This was useful when it was hotter, but now I mainly use it to ward off flies near my head.
-fly swatter: This is critical for maximum comfort while sunbathing and also a nice hobby to have to pass the time.
-watch: I just use my iPhone clock to make sure I'm keeping appropriate bathing and sunbathing time.
-towel: This is useful to dry off any sweat or water from my body and also provide coverage for any areas that I may not want to get extra sun.
-sunglasses: These are useful, but not something I use all the time. In fact, I usually don't use them.
-sunblock: I do not use this since I have not had to, but it's still good to have just in case I need to use it on overexposed areas.

Tonight was my last Saturday night here. Less than a week to go.

Day 16 - Vocabulary and Thoughts on Sun's Rays

I just wanted to provide a few terms you may run across when trying to best understand this treatment. It is a combination of the following vocabulary:

Melanogenesis: the process of the body creating more melanin, or pigment in the body

Balneotherapy: treatment/therapy due to bathing

Heliotherapy: treatment/therapy using the sun

pseudocatalase: an artificial catalase (enzyme) that helps remove high hydrogen peroxide levels from the sun; this is activated by sunlight

This morning I wanted to go a little later to get some stronger rays. I planned to stay until 10:30am but instead finished around 11am. Part of me is almost sunburned, but not quite. I didn’t want to get this close to getting burned but I think that was part of the consequence of staying out too late. I think I got a little more UV-B than I wanted to. It’s amazing how quickly you can see the effect on your body in such a short time.

My goal also right now is to try to get all my spots to be the same rich pink color. I’m getting there, slowly, but the hands are tough and a couple underneath my left arm too. I have a week to go so we’ll see how that works out. One of the things that surprised me a bit was the importance of the angle at which the sun’s rays hits your body. For example, while I lie down, some of the rays hit my arm at an acute angle but if I raise my arm up to get perpendicular with the rays, it feels warm right away. As such, I’ve been trying to manipulate my body’s angles and positions to maximize the strength of the sun’s rays.

Day 15 - Depigmentation Types and Thoughts on Repigmentation

Upon seeing depigmentation, it is easy to conclude that they are all caused by the same thing. But they are not. For example, I have spots that exist on their own, spots around scars, and spots around moles (halo nevi). My understanding is that they are all different biological pathways with unique and distinct pathways. All things are not created except for the fact that they are all likely caused due to some type of epidermal trauma. For scars, obviously, the epidermis was injured and the immune system had to respond. For moles, there is additional melanin and for whatever reason, the immune system has decided to target specific melanin of specific moles for depigmentation. Granted, some of these may re-pigment, but over a period of years. In most cases, I believe, they do not. And for the plain old spots, they are straight up vitiligo spots. The body is indeed a complex machine.

Regarding repigmentation, as everyone knows, there is no cure for vitiligo. That being said, I am currently here in Jordan at the Dead Sea to begin a particular type of treatment intended to counteract the symptoms of vitiligo, but will not address the cause of it. There has been evidence of some level of repigmentation. After day 15, I have seen a few dots of repigmentation that make me feel I can write a few thoughts and observations regarding the process of it. These are merely conjecture as I am not a physician. I noticed that the already existing pigments are now becoming stronger. I have noticed less new repigmentation and more stronger repigmentation of previous pigment. I know that sometimes this can return darker initially before it corrects itself to match the surrounding pigment over a period of a few months. I also noticed that the sharp edges of some of the spots are now a little softer. There is definitely an interaction at the interface of the regular pigmented area and the depigmented spot. In a larger area of mine, I have noticed a 3-layered sandwich pattern: the pink of the white spot, a white transition zone, and then the regular tanned colored area. Whatever the magic is that happens at this region, I'm all for it. Lastly, it seems as though the repigmentation process may occur in a reverse chronological order from that of the depigmentation process. So, if a spot developed from the inside out, then the spot would repigment from the outside in. I had hoped that a few pigmented spots would appear in the middle of a lesion, but it does not seem to initially be the case.

Just a few thoughts on depigmentation and repigmentation.

Day 14 - Petra, Judgment, and Inexactness

Today I decided to check out Petra through a day trip. It was very impressive and I highly recommend checking it out. I feel fortunate to have also seen Angkor Wat and Macchu Picchu so it wasn't the first ancient ruin set I've seen. Nevertheless, well worth a visit.

One thing I've thought a little about is judgment among vitiligo patients. For example, I've noticed on several occasions other vitiligo folks checking the state of my vitiligo and certainly, I have done the same. This must be done with great consideration, however. Sometimes, I usually hear folks say, "you're fine. you don't need to do anything. I can't even see anything. So and so has it much worse." I understand where this is coming from, but at the same time, we need to respect where each person is coming from. Someone who has 80% depigmentation may be perfectly fine with himself while someone who is 10% may not have the same disposition to accept this new version of himself. Like many things in our world, we tend to first of all, judge others based on what we ourselves think we can and should handle and second of all, view others based solely on what you can see of them rather than what is the reality. I think it's important to have confidence and belief that the person is doing what he or she thinks is best instead of contradicting and casting further judgement. I believe it is better to assume the person has more information rather than less and is using that information to inform decisions that are best for himself/herself.

Medical treatment can be quite inexact and approximate. Today I did not formally get the sun I have gotten in the previous days, but because I've conditioned my body right now, I feel fine with not having gone gung-ho with "not missing any days." At first, I was vigilant on minutes in the water, minutes on each side of the body, etc. but now I know that I'm getting enough of everything and can approximate the treatment and respond to what my body is telling me. I've also come to accept the fact that I will likely look very similar to how I arrived here 2 weeks ago. That's okay. Anything worth doing requires time.

Day 13 - Dead Sea, Back, and Petra

One of the things people will tell you is not to shave before you get into the Dead Sea. I would agree. And any small cut or opening you realized you didn't have will quickly be felt. And do not get the water in your eyes if you can help it. There will probably be about 2 minutes of intense pain. I've been usually doing an electric shave to avoid potential cuts. I've also decided to grow back my hair. I just wanted to have my scalp spots exposed to both the water, pseudocatalse, and the sun. I have a nice tan on there so I'm fine growing it back for now.

Before I came over, I was not sure how I could apply cream to my back without the help of someone. I invested in a back applicator thing. I've used it a couple times, but I've become pretty good at just contorting my arms and hands to get to every little spot on my back. It's possible. You just have to use the three key options: behind your neck, on the opposite shoulder, then underneath from your lower back. I'm not sure what kind of life skill this is, but it is one.

Tomorrow is a trip to Petra, one of the world's wonders. Will be a nice long day trip but I'll still try to at least get a little water time.