NYC Marathon - Charity Awareness and Fundraising for Vitiligo Research Foundation

Also, as part of my journey (and the journey of all those reading, be it family, friends or others), I have decided to raise awareness and charity money for the Vitiligo Research Foundation (http://vrfoundation.org/) by running the 2014 New York City Marathon on November 2nd. It will be my first marathon ever and I have been busy training to be ready for it.

The NYC Marathon is a great place to raise awareness as there are a number of individuals raising money for these charities and because there will be over 2 million people watching the race in person and not including the people watching on television. That being said, I will not likely make it on television but who knows!

Please consider spending a few minutes reading and passing this along to others. Thank you for joining me on this journey!

Link:

https://www.crowdrise.com/edsnycmarathonrun/fundraiser/edwardlee2

October 2014 Update

Sorry for the delay in the updates. I had initially planned to do them every few months but better late than never.

It has been about a year since I returned from the Dead Sea and have been using the pseudocatalase/UVB treatment therapy. I am excited to report that most of the smaller areas on my face have re-pigmented. No other major changes other than small dots of repigmentation on edges of larger spots. More than anything, because I tan well, my whole body is darker than usual as others have commented/noticed. This shouldn't be surprising as my whole body is essentially tanning every day.

That being said, since June I have been doing whole body (and most of the body actually) treatments primarily on weekends. I have been on a travel project since June so I have been on the road Monday through Thursday every week. To account for this, I bought a handwand mobile UV-B device. I'm not 100% sure if it has the same effect, but I thought it was better than nothing. I used to do apply this to my spots every day but because the surface area of the handwand device is small and my spots can be quite large, I've decided to only apply this to my face as of a couple months ago. Regarding purchase, since the US requires a prescription for even a small purchase like this, I decided to purchase this online (http://www.favoriteplus.com/dermahealer-uv-b-phototherapy-lamp-for-psoriasis-vitiligo-eczema.php). 

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.