|Frequently Asked Questions
|Are birthmarks genetic?|
|As of May 8, 2013, with the publishing of research in the New England Journal of Medicine, there is now conclusive scientific evidence that points to an in-utero genetic mutation as the reason for a port wine stain and Sturge-Weber Syndrome.|
The actual research can be found here:
|What causes a birthmark?|
|See above. There is a lot of folklore surrounding this one (Check out our collection of Old Wives Tales). The latest research points conclusively to a genetic mutation in the component controlling the musculature of the arterial and capillary walls in the region.|
|(Editor's note: the next several FAQs relating to this new discovery were contributed by Linda Rozell-Shannon, PhD, Founder/President of the Vascular Birthmarks Foundation.)
|What does this mean in plain language?|
|Many have asked what this new breakthrough with finding a mutated gene that caused a PWS or Sturge Weber means. In plain language, what this means is that 1) Moms or Dads did nothing to cause this, 2) There was a mutation in a gene that caused this, and 3) Now we can work toward a treatment that will "repair" the mutation and resolve the stain, but this would ONLY occur after an accurate diagnosis is made, and that can only be done once the baby is born. Gene therapies are currently being used to treat Parkinson's disease and lymphoma where once scientists found the mutated gene they then created a pharmaceutical drug to "repair" the mutation and treat the disease. That is likely how this will work but it will take a while before we see it in action.|
|Will only kids will get the treatment, or only adults, or both (when it is available)?|
|Many people have asked who this will apply to. This will apply to ALL ages. Consider people with Parkinson's Disease. Doctors found the mutated gene and created a drug therapy to correct the mutation. Anyone who gets Parkinson's will be able to try the new gene therapy. Same with this. They found the mutated gene and will now begin working on a drug that will correct this mutation. The FDA likely will approve use of the drug on adults, rather than babies, when it comes out. However, everyone should continue with their current treatment plans and remain optimistic about the future. But, remember, this will take a while, like a few years, before we see a treatment.|
Most most people don't understand just how long and how expensive the FDA drug approval process can be... and how expensive the final treatment as the drug company attempts to recoup all its R&D. Still, this discovery is definitely a miracle in our lifetimes!!
|Is research being done for KTS, or will this apply to KTS?|
|According to Dr. Martin Mihm, Jr., head of research for the Vascular Birthmarks Foundation, the KTS stain is different from the PWS or SWS stain. This study was done by collecting tissue samples from over 300 people with PWS and SWS. They willneed to do the same for KTS, but it is a good chance for people to start thinking about that study next, if they are not already doing it.|
|When will the gene therapy be available?|
|The real question you all want answered is "when"? Gene therapy is still under medical and ethical scrutiny in the USA. Now that the gene has been identified, the next step is to "create" a drug or recreate the healthy gene and put it into a solution to be administered to the individual. Once they have created this "substance" it will undergone strict clinical trials. Once the clinical trials have been evaluated, it will require further FDA and NIH approval before a therapy will be approved for treatment. They typically start with adults and then children. They will likely have to create a profile of who should go first. For now we must focus on the fact that they have found a mutated gene and then the doctors will need more tissue samples and funding to continue the research to create the gene therapy. We are talking YEARS before we see a therapy, but that means we WILL SEE A THERAPY. This brings hope and excitement to all of us. Everyone must continue their current lines of treatment until further information is made available.|
|Will the laser remove all of the birthmark?|
|Unfortunately, at this time, most people do not see complete removal of their birthmark by laser treatments.|
10%-15% of those treated see 75%-100% fading,
70%-80% see 25%-75% fading,
and 10%-15% see 0%-25% fading.
It appears treatments have a better chance of working when a person is still young. However, there can be psychological and physical issues associated with this as well.
|What is the connection between PWS and glaucoma?|
|Unless the PWS is near or bisects an eye there typically isn't any connection unless SWS is involved. If PWS is near or bisects the eye then the odds for glaucoma increase dramatically. In a newborn intra-ocular pressure should be checked as soon as possible. And obviously an internal mass behind the eye can cause glaucoma.|
|Is PWS a purely cosmetic problem?|
|Absolutely NOT, though a lot of insurance companies would like you to believe it is. Depending on the location of the pws complications such as glaucoma, thickening of the skin, raised granulomas, enlarged libs, loss of sensation in extremities, not to mention psychological and social issues. This site has plenty of information and articles by experts -- make sure to check out the Insurance section and this article by the American Society of Plastic Surgeons (ASPS). |
|What causes PWS to darken and pebble with time?|
|Darkening and pebbling does not necessarily happen in all cases, but is certainly common. The current thinking is that the blood vessels in the port wine stain continue to grow with age (hypertrophy). This causes the skin volume in the area to increase and more blood to show through which makes it look darker. Pebbling appears to be caused by small blood vessels pushing their way up to the skin. Often times small bumps will develop that can spontaneously bleed. Typically, this doesn't begin happening until a person is in his or her 30s, 40s, or 50s. |
Laser treatments are generally very effective at reducing these problems.
|Do all PWS inevitably get worse over the years?|
|Not in all cases, but in many. Thickening of the skin, pebbling, darkening of the stain, and spontaneous bleeding may all occur if left untreated. |
The Grade 1 port wine stains, that are geographic (having good skin peek through) are very responsive to therapy and usually do not form cobblestones. Lesions that are more confluent (the Grade 1 and 2 types that have deeper vessel involvement) often form cobbling as the lesion ages. The real aggressive Grade 3 lesions that have thick, deep vessels can form cobbling early in life (even before teen years). We see this with some KT cases as these stains are a bit different from a PWS stain and have a very deep component to the stain - that's why laser therapy is not ideal as the sole therapy in all cases.
|At what age can I expect to begin noticing changes in my PWS?|
|From informal surveys in our Newsgroup, these changes can start happening in a person's 20s, but don't typically start until the 30s, 40s, or 50s. |
|What are the risks of treating PWS with lasers?|
|Long-term: very minimal. Please see this section on Scarring and our founder's diary of treatments since 1996. Also, consider joining our Newsgroup to engage a worldwide audience currently undergoing treatments. As well, technology continues to evolve.|
|Is it safe to treat PWS on upper and lower eyelids with lasers?|
|Yes, with the understanding a corneal eye shield should be put in place prior to the treatment, and that the skin around the eye is very thin and sensitive so typically lower energy settings should be used than in other areas. |
|Will the PWS recur even after laser treatments?|
|In almost all cases YES. Lasers only treat the symptom and not the cause of the stain. At this point in time, it is the best technology medical science has. After the initial set of treatments is finished and you and your doctor are satisfied with the results, a follow-up treatment is only needed when you feel the stain is darkening. If a doctor tells you he or she can get 100% removal of your PWS and it will be gone permanently (much as we'd like to hear!) be very suspicious.|
|Will I need to continue treatments for the rest of my life?|
|Tough question. At the current state of medical technology the answer is a qualified "Yes". Some doctors, such as Dr. Geronemus, believe that if that PWS is "beaten" back enough, its progression is slowed and treatment intervals could become quite long.|
|Does PWS change during pregnancy? The hormonal shift does seem to have a darkening effect.|
|Informal surveys in our Newsgroup indicate this is a common occurrence.|
|Is it hereditary?|
|With the latest research, it does not appear to be the case. The current thinking is you have the same odds of anyone without a PWS of having children with PWS so go ahead and procreate.|
|Is discomfort with temperature change normal?|
|It's not necessarily normal but it isn't uncommon, especially if the PWS is on an extremity. It's quite common for the PWS to darken in the cold or during a temperature change.|
|Why is my pws side larger than my other side?|
|Whether an extremity, torso, or facial PWS, quite often there is asymmetry associated with the PWS side. The asymmetry is thought to be due to the extra blood flow in the PWS, though that doesn't necessarily account for hypertrophic bone growth. (Editor's note: we welcome some expert input here!)|
|What does laser treatment feel like?|
|This varies a lot depending on what part of the body is to be treated, whether topical analgesic cream has been applied, if a cooling device is used, how many zaps are to be given, etc. But in general, on the face, without any pain control being used, it feels like being hit by a drop of hot grease, or a really bad rubberband snap. |
There has been a lot of progress in pain control during a laser treatment. You can read a first hand account by our founder at Michael's Experience.
Click here to see Candela's doctor's handout of what to expect during a VBeam treatment.
|How do I find a doctor who has seen pws before and knows what he/she is talking about?|
|The absolute BEST place to start is by joining our worldwide newsgroup and asking its members. Don't worry - we love to share our experiences, both good and bad. We also have one of the largest online doctor referral lists but just because a doctor is listed that isn't necessarily a recommendation. Read our material, ask our members, make a list of questions, get references... be a good consumer!|
|Do other people have pws on their _______? (I seriously thought I was the only extremity person in the universe)|
|PWS can be anywhere. 85%-90% appear on the face, neck, and skull. 10%-15% can be anywhere on the body. |
|Does the location of my pws affect treatment outcome?|
|Yes. The temple, eyelid, and forehead areas tend to respond the best to laser treatment. Next would be the neck and sides of the face. The middle portion of the face which includes the nose, fatty portion of the cheeks, and the area under the nose tend to respond less and may take more time to achieve any fading. There has been little data on the effectiveness of laser on the trunk and limbs. The rule of thumb to follow when it comes to the trunk and limbs is the closer to the heart, the better the results. It is important to remember that there are no absolutes when it comes to pws and its treatment and there will always be exceptions to the rule. Keep in mind that other factors such as the laser used, paramenters, experience of the doctor, skin color, age, size and depth of the vessels involved all play a part in the success of laser treatments. It is a good idea to have realistic expections when it comes to results when trying laser treatments. |
|As a girl suffering from PWS, SWS, or K-T how will the birth control pill affect it?|
|K-T plus the pill = no no. |
PWS effects vary. For example, Julienne Persephone Dovey, our contributor to this FAQ, has a PWS on the left side of her face and it gets darker with greater dosages of progestins (vasodilation), this could lead to problems... discuss with your doctor.
Basically, it depends on which pill you are on.
(Editor's note: if your doctor doesn't know then find one who does!)
|My child will enter his first year in school; he will certainly have to cope with the cruelty of other children. What can we do? |
|Please see our Parent's Primer for help with this and related questions. As well, join our newsgroup. This is a frequent discussion topic.|
|What is K-T?|
|K-T stands for Klippel-Trenaunay syndrome. It consists of a port wine stain, bone/soft tissue overgrowth and enlarged blood vessels. Becky Strahin, one of our members with K-T, has a right arm which is approximately twice the size of her left and her right leg is 2" longer. She also have severe varicose veins in her right leg and has had blood clots. |
|Who performs laser treatments?|
|Laser skin surgery is usually administered by a plastic surgeon, a dermatologist, an otolaryngologist (ENT) or an oculo-plastics specialist. |
|How do you prepare for laser treatments?|
|As an adult, you should refrain from wearing makeup, wearing any perfume, and shaving on the day of treatment. |
Avoid aspirin, any aspirin containing medication or any other non-steroidal anti-inflammatories (NSAID), such as Motrin® or Advil®, for two weeks prior to treatment. Because aspirin thins the blood, it can interfere with normal blood clotting and increase the risk of bleeding and bruising. (Webmaster's note: some doctors recommend you don't take Vitamin E for two weeks prior as well).
Smoking inhibits the healing process, so stop smoking before your procedure and if you start again, make sure it is after you are completely healed. Besides, smoking increases muscle activity and can contribute significantly to wrinkles
Avoid any sun or tanning within 2 weeks before and stay away from Acutane.
Children have a different regimen depending on if they are going to get General Anesthesia or not.
Your doctor should also provide you with specific preparations.
Click here to see Candela's doctor's handout of what to expect during a VBeam treatment.
|What are all these acronyms?|
|PWS = Port Wine Stain|
BM = Birthmark (PWS is the preferred term though for some reason)
K-T-S = Klippel-Trenaunay-Weber Syndrome
K-T = Klippel-Trenaunay Syndrome
SWS = Sturge-Weber Syndrome
ybb = your birthmark buddy
mobb = mother of birthmark buddy
pobb = parent of birthmark buddy
tx = treatment
If you have other acronyms you'd like to see included here please e-mail them to the Editor.
|What is thermal relaxation time?|
|It is the time necessary for the targeted blood vessel to cool by half of its peak temperature after laser irradiation. |
|Will the laser burn my eyebrow hair?|
|It's recommended that if part of your birthmark to be treated is under your eyebrow that you have an ointment like SurgiLube smeared in the hair to prevent it from burning. However, if you have dark eyebrows they can absorb some of the laser's energy which is not what you want to have happen. Kim, our contributor to this FAQ, had her eyebrows bleached (both of them so they match) before treatments. This works well. (Editor's note: Of course, if you're going for the "look" just shave them off!) |
|What are the chances of being born with a birthmark?|
|A port-wine stain (PWS) is a congenital progressive ectasia of the superficial cutaneous vascular plexus that is present in 0.3% to 0.5% of children at birth. It first appears as a pale pink macule that evolves with time and becomes dark red to purple. Nodularities and a cobblestone pattern may develop, and severe hypertrophy with facial asymmetry or deformity sometimes occurs. |
|How soon should children begin with laser treatments?|
|In the last decade, perceptions about laser treatments have changed - especially when it comes to treating infants. Children as young as one month old are now considered prime candidates for treatment. Read more...|