Birthmarks and other vascular malformations come in all shapes and sizes. Due to their location or depth, some birthmarks come with very serious complications such as Klippel-Trenaunay or Sturge-Weber Syndrome that require immediate treatment. Many of us who are suffering with basic PWS birthmarks often hear from friends and relatives, “At least it’s only cosmetic, right?” Don’t let this attitude keep you from seeking out treatment. Birthmarks progress with time. Even those of us who have had relatively successful treatment should never think, “At this point it’s only cosmetic.” The complications are waiting down the line for us.
Calling your PWS condition cosmetic merely because you don’t have the compound conditions of KT or SWS (or because your focus is on fighting those conditions) is falling into the trap of dismissing PWS treatment as unimportant and not worth treating. It also works in favor of the insurance companies who would have you think this isn’t a medical necessity. Actually it’s in their best interest to cover the treatment of your PWS because at whatever stage your birthmark is in, things often will progress. Due to their nature, these low-flow vascular malformations are continually feeding tissue growth and becoming structurally less stable. Effective treatment has only been available for a dozen years; therefore, many of us older patients know firsthand what kinds of complications await port-wine stain sufferers.
As you know, at birth most simple port-wine stains appear a lighter pink or red patch of skin and have no textural differences from surrounding skin. Often with the onset of puberty birthmarks can intensify in color and begin changing their texture. By the age of 30 many changes have been reported ranging from rapidly increased overgrowth to cobbling and spontaneous bleeding. Sound scary? Well it needn’t be, just know what to watch for and learn the facts:
Cobbling: This is a change in appearance and texture of the PWS resulting in a darker, thicker, “cobbled” appearance. This is due to soft tissue hypertrophy (thickening of the tissue) and increased vascular dilation. This can make the PWS area look saggy, bumpy or even inflamed. Regular sessions of laser treatment can fight back against this progressive problem.
Blebs: A “bleb”, as we will use the term, is a small intense blood blister caused when affected veins expand and weaken near the surface of the skin. Blebs can ultimately produce spontaneous bleeding when they burst. Not a pretty thing! Blebs are often cauterized, or zapped with a higher powered laser such as the YAG laser. If you have bleeding blebs, you have a medical problem. Talk to your doctor and insurance company about getting these treated quickly.
Hypertrophy: Soft tissue hypertrophy and bony tissue overgrowth can impede the patient in a variety of ways including quality of vision, sinus health, oral communication and respiration. This is most common in areas such as eyelids, lower lip, cheeks and jawbone. Early treatment of your PWS can abate the onset of this problem. Almost all people with PWS have some asymmetry from the affected area. Limb PWSs can become even more debilitating. Laser treatment fights back the steady progress of growth in the affected areas. Other than laser treatment, surgical debulking of affected areas has been successful in keeping growth down, maintaining symmetry and avoiding further medical issues.
Once again, as this is often a progressive disease, thinking you have hit a point in treatment where you can consider remaining affected areas as “only cosmetic” is a mistake. If left alone the areas will become medical issues; if they are medical issues then, they are medical issues now.
Advancements are being made every day. To get the best possible information stay in contact with our community and check with the best doctors in your area for updates on what lasers are available. We’re all in this together and the more information we share the stronger we all are.