first I'd like to commend everyone for their courage to tell their stories.
Usually I avoid talking about my PWS. I'm not sure if its because I'm shy, or just don't like the attention.
I'm 28. My birthmark covers most of my left cheek, my bottom lip, chin, down partly on my neck and chest. From they cheek it goes back completely covering my left ear part of my bead. I have a patch on my back and alittle on my left shoulder where I had some agro laser treatment as a young child. i had " grommets"? in my left ear, I have very little hearing in that ear.
I have had no treatment since then.
Growing up, I can proudly say I've never allowed myself to get sucked into a fight no matter how much I was teased. Not that I didn't want to ! But as little as the doctors could do for me at the time, I was repeatedly warned by my mother to avoid any blows to my head be it from fighting or sports. I've always wished I could play physical contact sports. Ignoring it that I tried the netball team but the teacher took me off the team. I think I wanted to join to try and fit in more. I'd rather play with the boys on the aussie rules team :D
I've never really made friends. I moved around with my family and that didn't really help. I fell in love with reading. Books, comic books. Friends seemed too hard to make. Serious friends. My brother was popluar and we pretty much hung out in the same crowd but I always hung back. I've made more friends as an adult. From all sorts of life.
I attended primary school in Australia and high school in Trinidad. I think primary school was the worse as far as teasing went. Everything from prune face to purple people eater. It wasn't so bad in high school cause I began to get a bit of an edge. I chased a couple girls around with a snake skin and it kinda got the " do not mess with me " message across. Plus I knew a couple of the " cool kids ".
I still live in Trinidad. The reactions to me are different. Alot of it has to do with culture. Some people assume I can't even speak. (okay, I don't talk much) They asks my mother instead. She tells them to ask me themselves. They rarely do. I think maybe they think they are sparing me. People have come up to me positively and I really appreciate it. A few youngmen have surprised me with compliments also. I smile and I thank them all. People have also come to me and started preaching the bible, claim they have magical remedies. I nearly got into a very physcial confrontation earlier this year with a gentleman in my face getting very aggressive because I refused to take his number. So now when I hear the words " hello, can i ask you something ", I rarely answer yes. It may seem rude, impolite but I can only be so polite and I do NOT have to stand around and be insulted. I am an very respectful person, I mind my manners but I am human.
School children. Young children. oh wow. I will avoid them if possible. My tolerance level is not what it use to be. Its tough. Really tough. If a child tugs his/her mother and asks " what is that ? " I can even smile alittle at the kid. Kindygarden age kids, I smile, let them know I'm human. But kids in packs are trouble. Even teenagers sometimes.
Living with my birthmark, its my strongest and my weakest part of me. Its helped me learned patience, be open minded. Most of the time I can remain cool and calm when problems arise. I'm mostly child and in spite of my birthmark I can be not noticed or not paid much attention to and it gives me alot of time to " people watch ". I love watching people. I like listening. Men seem to appreciate that. They talk to me about their girlfriends/wives. I'm fairly shy, but when possible, i love dropping off food hampers to the needy. Especially christmas time. People remember me easily ! I am considerate of others. too considerate sometimes. I let people get away with a lot of things. I hate confrontations. I let it go most of the times because some things just aren't worth it.
Family was never stable. My parents seperated and there was a bad custody battle. My father died, another battle with his family that i did love. While my brother, a year older than me, was freaking out, acting out alot, very resentful of our mother for decsicions she made hoping to give us a better life, threw out the years my birthmark help me learn how to cope. I wish I could of passed some of that on to my brother then. i seemed wiser. Grew up alittle old maybe.
Living with a birthmark has given me a great deal of understanding of why people become addicts. Abusive. Suicidal. I'm pretty cold but I've learnt compassion.
Several years ago my doctor asked me to have some photos taken to show other doctors. To see what can be done. I've felt down sometimes. Taken then out at night and looked at them. Me. I look in the mirror yes, but I don't really take a good look at my birthmark. I'd cry alittle. Put them back and go to sleep.
I have my hang ups. I deal with them the best I can. Not every day is roses but every day is a new day. I have good days when I can't keep my mouth shut talking a mile a minute. I have bad days. Not feeling up to leaving the house but I square my shoulders and take the day as it is. I'm a bit of a loner and mostly I like it that way. Its calming to me. My mother is involed in different voluntary organisations and I assist her. Sometimes we are in the presence of the Prime Minister or President and oddly enough its not my birthmark that bothers me but their status that makes me wanna hide.
I wish my father had been more supportive of my mother when I was a baby/toddler. He blamed himself for my birthmark because he strayed while my mother was pregnant with me. I was a reminder. He didn't hate me, he did love me. i remember alittle of coming home from a treatment. I was bandaged up, I started throwing up. He bail and left all of that to my mother. He couldn't handle the stares and questions like my mother could. He would pick me up and hide my face against him. But I was nuts about my father, until the day he died when I was 8.
From reading the posts on this board, I consider myself lucky. Please, do not be offended but I didn't know my PWS is kinda " good " compared to others. I've never heard the words " Capillary malformation (port-wine stain) and either extensive venous malformation or component of arteriovenous-malformation " until a doctor in North Carolina saw my pics this year. I've expierenced bad ear infections and that was about it. Occasional scratches. I cut myself with a razor once. I was really young. Pretending to shave or something. Freak my mother out. Mostly living with my birthmark has been medically uneventful until a couple years ago. I started having high sudden fevers out of the blue. Last a couple days. Unable to move my neck. Birthmark swollen. Stiff, painful. I can't say for sure what really caused it but the last time I was ringbarking a branch, head in tilted to the right. Within minutes I could feel it coming on. When it happens I feel horrible inside. I don't work. No insurance. I live at home. My contribution to my household is cooking, cleaning, the garden, taking care of the dogs, leaking pipes, driving my mother where ever she needs to go. I consider myself kinda lazy, but not being able to pick up a broom an sweep really upsets me. It hasn't happened for a while. I kinda figured out how to avoid it. So far so good. I get headaches sometimes that really bother me, feeling the pain from the back of my head to behind my eyes. I'm not sure if it is related to my birthmark, i get muscle spasms in my neck and shoulder alot.
I'm hoping to change my life. For years I've told myself I'm normal. I'm okay. People who haven't seen me for years keep telling me my birthmark has grown. I shrugged it off. When asked why don't I get treatment, i shrug that off too with " i got all my legs, fingers, eyes, when other's don't, i can live with a birthmark". The chances of my birthmark being removed seemed really impossible. I am beginning to open up that it IS possible. To stop looking at what seemed impossible hurdles. Location, money. PRIDE is a big thing. Funny how someone who can have low selfesteem sometimes still have pride. I am seriously considering having surgery. I am hoping it will help me turn my life around. I think I'm an OK kid but there's room for improvement. I'm definitely no angel. I can be a nutcase. I'd like to be better educated and find something that I really enjoy doing. If I can find a job thats as much fun as driving in Santa's escort along a beautiful coastline as he gives out toys, settle down with someone really special in my life, I'll be pretty darn happy.
Thats pretty much my story for now. Thank you all for listening. I have a road ahead of me. I'll be on it one step at a time.
I would have to say that was a very interesting story.
Here is a couple things that stuck out in my mind while reading that might be bennift you. I have found that I perferr talking to children for one because they are more intreaged but are not as judgemental as adults. Children do not understand our condition so I think of it as educating them. When parents do the hush hush thing that because it imbaress them bothers me because the child is just curious and I go up and talk to all of them. I figure if that child does not judge one person in his/her future or even makes a friend or a relationship with someone with any kind of disablity because I educated them about my birthmark that it was worth it. Remember I talked to hundreds in my life. Just one and it is worth it.
From what you discribed from your birthmark I am convinced that you most likely have PWS (port wine stain) and quite possibely might have Sturge Weber Syndrome (SWS). I have both. If you had SWS it would explain the headachs, and the extensiveness of your birthmark. You might even have KT syndrome with is linked to SWS in your neck and shoulder, but I do not know KT very well, I do not have it so leave that up to a doctors to say. Also, I would highly, strongly recommmend going to an eye doctor and get tested for glaucoma. The reason is Glaucoma is a big factor with SWS. If you have PWS or your birthmark any were near your eyes you are at a very high risk of having it. If not treated it can lead to blindness. I do not have glaucoma but a different eye condition linked to my PWS and I am going blind and am currently in a blind school for rehab. I strongly recommend you getting this checked insurance or not. Glaucoma sneaks up on you and you will not realize it until it is to late. The pain in your eye could be a factor of glaucoma.
Also, I would suggest trying to get insurance now before trying any surgery because most insurance companies do not like to cover pre existing conditions but if your birht mark is growing (like mine as and several others with PWS and SWS have) it is very expensive and you have to prove to the insurance company why you need surgery.
I have had laser treatment for the past 18 years, and now have had three plastic surgeries that I had done last year. If you would like to see pictures you can see them on my website www.hankspws.com.
Also, you might consider asking a couple of the experts on the front of this website a few questions. Ask the Glaucoma, KT, and PWS Experts for info on the condition and send them pictures. They would be able to tell you more about them then I would. I can only tell you personal experenses.
If you have any questions at all please email me or ask here on the group. We are here for you.
I will definitely email you. Thank you.
My life has been kinda interesting. I enjoy being a part of different cultures. I've met some great people.
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