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| Folks with Advice |
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People Who Have Been There and Done That: Editor's Note: while we strive to make sure this section stays updated people do change their e-mail addresses and don't tell us. If you are notified an e-mail address is no longer good please let us know. Thanks!
If you are interested in being listed here please e-mail the Editor with your particulars. |
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 Gordon Dinkel: Registered Nurse. Recently I worked at Atlanta Dermatology & Vein Research Institute with Dr. Tiffani Hamilton, Alpharetta, GA as study coordinator. Provided training/clinical support on a variety of dermatology lasers while working at Candela Corp. over a span of 6 yrs, including Pulse Dye Lasers (Vascular lesions), Alexandrite Lasers (pigmented, tattoo removal, hair removal), Erbium YAG Lasers (skin resurfacing), ND:YAG Lasers (pigmented lesion, tattoo removal), Urology Lasertripters (Kidney stones), and Cryosurgical equipment (liver tumors). I have attended medical trade shows, and provided lectures on laser physics, safety, and tissue interaction at medical workshops and meetings. Also worked previously with another laser company - Heraeus Surgical(LaserSonics), providing clinical support for Co2 and ND:YAG Lasers. Served as a clinical specialist in the operating room for 6 yrs covering all surgical specialties, with a primary focus on laparoscopy and lasers. I enjoy working with this equipment, seeing what it can do for patients, and providing support for our patients. E-mail me. |
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| Joan DeLong: I live in Nova Scotia, Canada. I have undergone 6 Pulse Dye Laser treatments to try and remove or dramatically fade the PWS that I have on my face. I am very pleased with the results so far. I have had a lot of fading and some very small areas are now gone! The PWS around my lip seems to be a very stubborn area and I haven't seen much fading here. However, I have noticed that the laser treatments have reduced the swelling that I have had with my lip. Our Provincial Health Care here in Nova Scotia fully covers laser treatments on the face and neck only for the removal of PWS birthmarks! I will be more than happy to share my experiences with anyone wishing more information about my laser treatments. E-mail me. |
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 Linda Shannan, MS: I'm the Executive Director of The Vascular Birthmarks Foundation, as well as a national researcher in the field of hemangiomas and other vascular lesions (of which a port wine stain is one). My primary focus is hemangiomas. E-mail me. |
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 Karen L. Ball: I am the mother of a vivacious teenager with Sturge-Weber syndrome and have an energetic son who keeps us on our toes! My husband, Kirk, and I founded the Sturge-Weber Foundation in 1987 to provide support and facilitate research into port wine stains, glaucoma, and seizures related to SWS. At that time, there were no other organizations serving the needs of the PWS/SWS community. It has been gratifying to watch so many other individuals reach out and join the fight in their own unique manner!
Today, I continue to be the CEO of the Foundation and to facilitate support and research into PWS/SWS via clinical and scientific investigations. We forge ahead to provide insight into these perplexing syndromes but maintain personal contact with folks with the 1-800-627-5482 line, via email and the Care and Share Program. The Foundation also has an on-line support group for the "been there done that" advice so many of us seek and we continue the popular and well attended regional and international conferences for those essential one to one meetings. I am an author and invited guest speaker at industry trade shows and teaching hospitals around the country. However, with the many hats I wear each day my most gratifying hat professionally is when I can visit with you and offer all that I have to give to make your journey a little easier than mine was in 1987. Y'all send an email or give me a call anytime! E-mail me. |
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| Ann Marie: I have had various laser treatments over many years for a PWS over the lower half of my face, neck, left ear & behind my ear. I have had three reconstructive surgeries on my bottom lip to reduce the size. The most recent laser treatment has shown the greatest improvement. Since I was four years old I have been using Covermark Cosmetics. Please feel free to contact me since I am a good listener and understand the heartache of a facial deformity. E-mail me. |
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| Julie E. Hutchinson: I have a port wine stain birthmark on my chin, right cheek and neck. I wore no make-up until about age 14, when I began using Clinique cover-up and became a make-up artist!! Although the make-up boosted my self esteem, it still came with its downsides - playing sports and getting all sweaty was no fun, and it took me about an hour and half to get up in the morning. My parents read about laser surgery as a treatment, and convinced me that I ought to give it a try. Well, I had no idea what I was getting into. I'll never forget my reaction when I woke up the first morning after my first laser treatment, looking in the mirror and realizing that the 400 dots were still there!! It was not the easiest procedure to deal with as a teenager (or an adult for that matter). I am now 28 years old, and I am still getting laser surgery treatments on my birthmark. I took a slight intermission from the treatments during my college years. My parents were disappointed, but understood how difficult the treatments were from me. Then, at age 24 I met my boyfriend, who is now my fiancé, and he convinced me to continue the treatments. He realized how much my birthmark bothered me, and gave me the strength to continue with the procedure. I have made it to the downhill part of my journey. The laser treatments are still difficult, but the outcome is amazing. I have set a goal of having my birthmark gone by my wedding date, summer 2001!! My birthmark has drastically decreased in size, and is a light red color rather than a deep purple. In fact, the hardest part about the laser treatments now, is that I have to go back to wearing heavy make-up until the dots are gone, because I have gotten used to wearing very light make-up. Today was a very monumental day for me, because I had laser surgery on Friday and went back to work today (Monday)! I told the colleagues that I am working with about the procedure, and they all thought it was great. They were very interested in hearing all about it. It made me feel so much better to be able to continue my life, and let people into my life, rather than force it to stop until the dots fade. I realized that time is too precious for that. E-mail me. |
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 Patty Bell: I am a professional makeup artist working in the film and television industry and would like to volunteer any makeup advice that I can. I am a mother of two young boys, one born with a port wine stain on his leg. My grandmother, now deceased, also was born with a port wine stain on half of her face and suffered her whole life because of it. E-mail me. My websites are:
www.onlocationhairandmakeup.net
www.pattybellmakeup.com |
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| Julia Yarbrough: Our daughter, Stephanie Linell is only 7 1/2 months old. She was born with what we thought then to be just a Port Wine Stain. It covers her left eye and goes back to cover her forhead and part of her scalp. When she was 4 months old, she was diagnosed with Sturge-Weber and glaucoma was confirmed in her left eye. As of today, she has undergone eye surgery to stop the glaucoma because none of the eye drops worked and has been hospitalized two times due to seizures. Her father and I, plus my family have been desperately seeking any and all information that might be out there. We have been in touch with the Sturge-Weber Foundation and have found them to be a good source of clinical information. What we would really like, though, is to communicate with those who have "been there and done that". E-mail me. |
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| Jo Anne Ambrose: I bring 32 years of experience with the ups and downs of having a portwine stain birthmark on my chin, cheek, neck and chest. I would be willing to share my experiences (good and bad), and personal feelings and answer any questions a curious person may have. I am familiar with the Candela Laser, Emla Cream and am on my fifth treatment with hopes to complete the process by the coming summer. My individual insurance company DOES recognize this as a medical condition, so tell people not to give up. But, I am finding it hard to covince my husband's HMO the same. I have done much research and downloaded many articles. If anyone can provide me with more information I would be very greatful. E-mail me. |
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Jenny Schnickel: I live in Minnesota and I’m 24 years old. I have a port wine stain, it is only on my leg though, nothing drastic like on my face. It covers most of my left foot, most of my left shin and I have a big chunk on the side of my left thigh. It is pretty dark red. I have never had any problems with it though and have never gotten it removed. When I was born my parents were considering having it removed but it was expensive and the doctors said it would take a lot of treatments and be painful. As I got older they asked me again if I wanted to get it removed but I said no. There are times I wish I didn’t have it, well, pretty much only when I would like to wear a dress that is above the knees, but other than that I’ve grown to accept it and deal with it. In fact, I like it and it’s a part of me and I don’t want to get rid of it. I found the birthmark.org website and have emailed a couple younger teens that are depressed and having trouble and they were so happy when I emailed them and tried to bring their spirit up and give them advice. It really gave me satisfaction to help them. I remember when I was in middle school I really didn’t want it, because that’s a rough time and image is everything and it would’ve been great to have someone to talk to back then that understood what it was like to have a birthmark. I ended up growing up to be a very happy and healthy person. I went to college, have had successful relationships and excelled in hockey which I still play on a women’s semi-pro team.
I just want to be here for youth if they have confidence problems or self esteem issues. I know my birthmark is just on my leg and not on my face but it does cover a considerable amount of my leg. Email me. |
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Rachel Hoeschen: I was born in Minnesota and now teach second grade in the Czech Republic. During my middle school and high school days I received thirty plus treatments to fade the port wine stain on my leg. In all almost forty percent of my body is covered by port wine stain, including my entire left leg (up to my belly button) and my left arm. I was very pleased with the results of the laser surgery, on a good day you can barely see the port wine stain on my lower leg and arm. Although I was incredibly embarrassed by my condition as a child, even to the point of refusing to wear shorts or swim suits for years at a time, I have now (with the help of my treatments) overcome my fear enough to teach swimming lessons (in a swim suit!) every summer at the local pool. Even though I stopped my treatments when I went to college and subsequently Europe I know that I will have start them up again soon as my port wine continues to darken. Please feel free to contact me with any questions about the laser treatments or to just have someone to talk to. I know what its like to feel like you are different then everyone else. E-mail me.
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Lisa Kerns: Pale to begin with, I was born with a white birthmark (looking something like Australia),slightly larger than my hand over my left hip/buttock area. Flat, I never noticed it much and it really didn't impact my childhood. Looking back at photos, I now notice the slowly developing indentation of the birthmark over my left hip/buttock area. As I grew, it too grew, always slightly larger than my hand. My childhood medical records also reveal mysterious leg pains and periods of exhaustion that were never fully explained.
In the summer before I turned 26, I was highly stressed, preparing for my upcoming wedding, and steadily trimming down after gaining weight in college. It was then that I began experiencing constant, excruciating pain in my left hip. I went from sports injury doctors, to tumor specialists, and onwards until one clever doctor (three months later) finally looked down and said: "Your birthmark is changing colors." Sure enough, I seemed to have developed what we dubbed a "hyper-color" birthmark that changed from angry pink to purple and blue within seconds, often indicative of my level of pain. Biopsies revealed minor vascular malformations of the capillaries and a small amount of spindle (benign tumor)cells - neither enough for a clear diagnosis.I seem to float somewhere between an albino Port-Wine Stain gone wrong mixed with a little Leiomyoma. I haven't really seen a group for that yet.
It took almost two years of testing, over 100 different doctors and specialists, two well-known university hospitals, and a multitude of tests, biopsies, MRI's, x-rays, pain drugs that never worked, and general unpleasantness to find the cause - and they never did figure out quite what it was enough to even name it. Over the time it took just to (not) diagnosis me, the pain increased steadily down my leg, causing the bottom of my foot to swell.I became crippled, barely able to walk and medically required to work from home. The birthmark began to grow much faster outwards and then dug into me, devouring and morphing the fatty tissue down my thigh until it had pushed down onto the muscle of my hip. Despite the physical evidence, many doctors even questioned whether I was really in pain.
In the end,I found a wonderful oncologist who not only believed me, but removed my painful birthmark. While I have a 13 inch scar and minor malformation, I thank God every day for bringing me through such anevent. The experience certainly brought me closer to my family and God, but I also learned to laugh harder than I have ever laughed before. I mean, essentially my birthmark ate by left butt cheek. My daddy always says you can deal with life two ways - laugh or cry. While sometimes the pain was so strong I had to do both, I tried my best to find the humor in the situation whenever possible.
September 15 was the one year anniversary of my life-changing surgery. Where I had become a cripple barely capable of walking, I now kick box, chase my furry friends around and recently went on a physically grueling two week camping/hiking excursion - and I still laughed through every beautiful moment, exceedingly grateful to have a chance at life again. Looking at me now, you'd never know what I went through or how strong I became because of it, but I did and I am.
Considering it all, I can't help but think that there must be others like me who don't fit into a set group and would like support with a little humor. I certainly hope that no one else out there ever experiences what I went through, but I would like to offer my contact information in case you come across someone with a similar or their own odd birthmark predicament. E-mail me. |
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