Dermablend - revisited

We went back to Macy's to return the less than impressive Dermablend, and realized that it wasn't the makeup, but the lady at the makeup counter, that was less than impressive. For those who try it, you don't rub the makeup on the spots, you cover the entire area with the makeup. I felt pretty stupid, because this seems pretty obvious, but when the first lady told us to get Q-tips and fill in the spots, that seemed pretty logical too. The results were much better!
We did sr. cheer picture the next day, outside, and you can't tell at all. If you get right up on her leg, it looks like heavy makeup or pantyhouse, but we will take it. After the good makeup artist showed us the right way to do it and we applied it to her leg, she teared up. I think it was quite a relief for her to know she can mask it when she needs to.

I will post those pictures as soon as i wrestle them out of my camera. There's got to be an easier way.

As far as treatments, she's been going 3 times a week for 2 weeks now. This week she went from 45 secords to 55 seconds and then down to 22 seconds. The 22 seconds was a new nurse. I'm guessing she made a mistake, but who knows. Im going to go with her to her appt tomorrow because it seems to us that the spots are getting larger and are melding together much quicker than they were when we started treatment. I don't know if it's one of things where it gets worse before it gets better? I'll find out and post what I hear.

We are leaving Sat for a week of vacation in Key West. I. am. so. excited!
We are going to try and have some fun with letterboxing while we are down there. Check it out at www. letterboxing.org. very interesting.

Dermablend

We went to Macy's to pick up some dermablend and give it a try. Dr. Pandya thought it would be a good temporary fix for special occasions.

They have a special formula for leg and body. It basically makeup that's meant to last for a day or two. The pictures on the web and their brochures show really good results so we were hopeful.

Macy's wasn't doing Dermablend any favors today. The lady that tried to help us had no idea what she was talking about and obviously hadn't been trained on the products. We ended up spending about an hour there, trying each of the shades on separate areas to see what looked best. We settled on Caramel and got the Cool Beige setting powder. It didn't camoflauge the lesions, but did tint them enough to make them less noticeable. We were pretty happy until we got outside and saw her leg in the sunlight.

I haven't uploaded the pictures, but will do that tomorrow and post them.

I ordered DyODerm skin dye and will also post results from that when we get it. I've heard that it can tint a little orange, but I guess it depends on individual skin tones.

The day after the first treatment the lesions look pretty much the same.

Dr Amit Pandya

Good leg and affected leg side by side.

Here's K playing around in the docs blue gloves before he came in.
You can see some of the lesions on her leg.

We met Dr. Amit Pandya at SW Medical Center.
We've been on his waiting list for 6 months and got to his office 2 hours early just to make sure we made it. We did NOT want to be late and have to reschedule.

Dr. Pandya is a Professor of Dermatology at UT Medical Center, he writes articles and speaks on vitiligo at conferences and events. He looks different than this picture in person. Younger I think.

I was really excited to get K into see him, as a number of dermatologists we've been to have recommended him. I was not disappointed at all. He had a great personality, he listened, answered our questions, didn't rush us, and didn't bat an eye when we both started crying in the middle of the appointment.

He explained that K had segmental vitiligo and that she would likely never develop any lesions (that's fancy talk for spots) on the left side of her body. He was also very hopeful that it wouldn't travel above her waist. That's when we started crying... awesome news!

He compared segmental vitiligo to a late developing birthmark. I don't remember exactly what he said, but plan to do a little googling on it later. He showed us a bunch of pictures of people that he's treated, and he's been able to get up to 70% of the pigment back. He said that non-segmental vitiligo is much easier to treat and obtain results from, and segmental on the extremities is the toughest to treat, but he thinks that with light box treatment, 3x a week, we should be able to see some results in a few months.

We did the eximer (sp) lights last year when there were fewer lesions, but we didn't really see much difference, except for the huge $1,500 dent in our wallet. Hopefully this will work better.

Here's her routine for the next 2 months, which may or may not be adjusted at that time:

Each day, 100mg vitamin C

40 I.U, Vitamin E

100mg Alpha Lipoic Acid

Every other day (Mon/Wed/Fri) she will do light box treatments for between 45 seconds and 4 minutes (she will build up to 4 minutes).Narrow band UVB light (also referred to as narrowband and NB UVB) is a relatively new vitiligo treatment option that helps to repigment cells, with minimal to no side effects. The box looks like a stand-up tanning bed, surrounded on all sides. She wears a long sleeve t-shirt and a face guard that looks like a welder's mask to protect the areas she doesn't need to treat. We are waiting on the insurance co to let us know if/what they will pay for the treatments. They are $85 each, 3 times a week. I know... that's so much money... but what do you do? I'd get a 2nd job if I had to.

Every other week we will apply a thin layer of Clobetasol, 0.05% topical cream to the lesions before bed. Apparently the steroid in this cream isn't great for the skin and can be a little harsh, so we do one week on and one week off. It could thin the skin so the veins may become more noticeable.

Did I already say it could be anywhere from 100-300 treatments? I've chose to not do that math. Maybe tomorrow. I feel extremely blessed to have a great job and the ability to "figure out" a way to pay for the sessions. My heart is heavy for people who don't have the same options.

Dr. Pandya was telling us about vitiligo in his country (India) and in Africa. The darker the skin, the more obvious the condition, and it caries a tremendous stigma in those areas, where the technology isn't available and the patients wouldn't be able to afford sessions if it were available.

People are treated horribly and discriminated against in so many ways. There may be a lot wrong with America these days, but we are still blessed beyond measure in so many ways.

I'll write tomorrow or Thursday about our attempts at camoflauging the lesions, and new stuff we are going to try. If you are walking this path, or journeying with someone you love, you aren't alone.