Sturge-Weber Syndrome Community

Since childhood I'd had a medium-dark purple stain on the left back of my neck. It never caused problems, so other than brief twinges of embarrassment at the barber's, I've never been too concerned. Sometimes it seemed to enlarge and darken, but then it would recede. No big deal.

In early adulthood, I developed psoriasis, and had a few years of off-and-on treatment with UV and cortisones. It settled down, and didn't recur till middle age. It happened in ~2003 or so that I came across some research at Medical College of Georgia that found glycerin topically or orally resolved animal-model psoriasis, so I tried it.

Miracle! It has suppressed and cleared large lower limb patches, and quickly controls outbreaks anywhere they occur (p. is very arbitrary and sneaky about such things.)

A couple of years ago, I happened to notice that my neck was almost clear of the stain! I checked, thought, applied some glycerin directly a few times -- and now I defy anyone to detect that it was ever there.

Glycerin penetrates skin and circulates systemically, and seems intimately bound up with establishing and maintaining "normal" skin layering and maturation. I can only speculate that this includes correction/control of capillary development, too.

Brian H:

I found this article: http://www.medicalnewstoday.com/articles/4790.php

It seems that while glycerin has been shown to improve skin related conditions like "...psoriasis and non-melanoma skin cancers, that result from abnormal proliferation and maturation of skin cells, and may augment wound-healing", those kinds of skin condtions involve the skin cells, and I couldn't find any evidence that glycerin would affect capillary proliferation. I didn't find any reference to port wine stain and glycerin. Since port wine stain can be in the deeper layers of the skin (and on the brain) I don't think this would be much help, except for maybe making the very surface of the skin seem soft/smooth. Do you have any addtional information, or can you cite any particular research or articles directly relating to glycerin and port wine stain?

Thanks!

As I said in the post, this was based on personal experience. My extrapolation was that reviving skin layers and getting them operating in proper sequence might/would have implications for the capillaries embedded in them.

In any case, the issue has not been directly researched, it is hard to make coherent statements. But as for the "deeper layers" of the skin, the glycerin operates, it seems, by STARTING at the deepest layer and working its way up.

The brain involvement is another ball of wax entirely. The only skin/CNS link I can draw is that both are ectoderm tissues. On a wider scale, I am beginning to think it is not wise to get too mechanistic about biological functions. DNA seems to have many layers of programming built into it, some of which get triggered inappropriately, and many of which are pushing against each other in a dynamic balance -- which can be "tipped" too far by circumstances or coding errors. My deep suspicion is that psoriasis and port-wine share that characteristic, as they are clearly patterned, but running amok at the expense of the organism as a whole.

As a practical matter, glycerin is one of the safest and most broadly used skin treatment and salve components, and additive to numerous food and cosmetic products, e.g. Topical application might be worth attempting and exploring; certainly it has a cost advantage of orders of magnitude over other approaches!

P.S. Edit note: it is perhaps interesting that when glycerin is "unwinding" a long-standing and thick psoriasis patch, it first softens it, then descales it. What is left underneath is a bright red patch of skin; that persists for a while, then fades to pink, marbles, breaks up, and the pieces shrink to small patches, then dots, which disappear. My speculation is that the "bright red" stage is what results from the heavy capillary vascularization of the proliferating psoriatic tissue, which has at that point ceased to expand.

It's what happens thereafter that has implications for P-W, I think.

Brian - I do know that some people with PWS also experience dry patches, and glycerin might be a good alternative to other topical treatments. I, myself, often use glycerin soap and lotions, as I have "sensitive" skin.

It's my understanding, so correct me if i'm wrong, that you don't have a port wine stain, but psoriasis and the redness that occurs along with that condition. I'm not a medical expert by any stretch, but from what I've read about psoriasis, the immune system somehow causes or allows the growth cycle of skin cells to speed up. The psoriasis website says:
"A normal skin cell matures and falls off the body's surface in 28 to 30 days. But a psoriatic skin cell takes only three to four days to mature and move to the surface. Instead of falling off (shedding), the cells pile up and form the lesions." A port wine stain is a vascular malformation, and I don't think that glycerin would effect blood vessels in the same way as skin cells - but I could be wrong. I will check with our experts, and let you know what they think about this.

I hope you understand that I don't doubt that you have had success with gycerin for your condition, and I also hope that you understand that we have to be careful about presenting treatments for port wine stain that aren't researched, as to not mislead or confuse patients. I do agree, however, that glycerin probably wouldn't do any harm. And wouldn't it be great if such an inexpensive product would have some positive effect on PWS?

Again, I will bring this up to our physician advisors and see what they say. Like I said, I could be wrong and someone might want to pursue some research along these lines.

The stain was unrelated to the psoriasis as far as I know; it was there from early childhood, and never caused discomfort. The psoriasis did not appear until early adulthood, and was treated with cortisones and UV. During all this time, there was no change in the "neck stain", nor any discomfort there.

Only when glycerin began circulating in my system (which is known to happen, as distal locations of plaque experience some benefit from local application anywhere) did the stain fade. At no time did it show any behaviour or cause any sensation characteristic of psoriasis. There are "red stain" versions of psoriasis, called "inverse", but they occur in folds and are chafing, burning, and very uncomfortable. I am experiencing the latter stages of one now; it is responding, albeit much more slowly, to topical glycerin. The etiology of "inverse" is still a medical mystery, other than the fairly obvious stimulus (contacting skin sections irritating each other.)

The only common element between port-wine and the transient psoriasis red skin during healing seems to be excess populations of capillaries. And the rapid reduction of these populations when adequate glycerin is available to the basal layers of the skin -- or so my hypothesis runs.

Brian - I did write to one of our physician advisors and he said Glycerin won't work on PWS, BUT Glycerol does! Now I don't know the difference between the two, but he said they are "working on ways to get it through the upper skin barriers into the dermis". So while it looks like it isn't a viable treatment at this time, it just might be possible in the future.

Thanks for bringing the subject to light. I'll let you know when I hear anything else. Again, if you know of any articles I can read about glycerin treatment, regardless of the skin conditon, please let me know.

P.S. I just found your posts to the psoriasis board, and I can see that you are very determined and dedicated about glycerin treatment for psoriasis.