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-   -   Question for working adults with PWS (http://birthmark.org/board/showthread.php?t=3373)

superstripe 03-26-2009 06:09 AM

Question for working adults with PWS
 
I am a working adult with a facial PWS that gets laser treatments every 6 to 8 weeks. I have to take a week off from work every time I have a treatment scheduled because of all the swelling and bruising after the treatments. I usually wear make-up and I haven't been open with anyone from work about my PWS, so I can't imagine going back to work after the treatments. I have had about 9 treatments so far and it's getting really hard to take time off from work. I am afraid I am putting my job in jeopardy by continuing to get these treatments, which sucks because I love my job. On the other hand, I have gotten really good results so far and I don't want to quit the treatments, so I need some insight on how other people handle laser treatments for PWS with work. One thing I have considered is applying for FMLA for intermittent leave for treatments, but I don't know how that's going to work out. I would appreciate any feedback. Thank you!

rhonda 06-22-2009 04:25 PM

I am the mom of a 12 year old boy who has had laser treatments since he was 11 mos. old on his facial PWS. I have never kept him indoors or away from friends or the public during the healing time post treatment and even sent him back to school on Monday following a Friday surgery. I have done this for the very reason you are writing about. I just put him on a plane by himself 2 days post surgery and while he's more concerned about his looks these days, his age is a factor, I want him to live his life regardless of what people say or if they stare. Be open with your co-workers, give them a chance to support you. Having a PWS is nothing to be ashamed of and there are far worse conditions that people suffer from, without the option of treatment. Get out there and live your life and give your boss and co-workers the benefit of the doubt. Good Luck!!

kkent 08-18-2009 05:56 PM

Wow.. Rhonda. I am impressed with your insight. I am 30 and just now realizing the medical information behind PWS. I have PWS on my face and always thought it wa sa skin discoloration.. nothing more. My boyfriend didn't know of it the first year of our relationship.

It is easy to say to just go out and be yourself.. who cares what everyone thinks right? I have that mentality but the thought of going outside with no make up frightens me like nothing else.

I am meeting with a dr this saturday to discuss treatment.. most of my doctors don't even know I have it.. most people don't know because I cover it well... became quite the make up artist. It is about the size of a 50 cent piece.. and dark red. Right on my cheek by my nose, so very noticeable.

I condone you for making your son realize it doesn't matter what anyone thinks.. it's very different being on the other end of it.. the one who bears it.

shariminnier 09-04-2009 12:24 PM

I understand your pain! I am a 34 year old female RN. I too have had problems with taking off for my treatments. I agree with you, I could NEVER go anywhere without makeup, let alone right after treatment, when it's the worst!!! In the past I have put off treatments because of this issue. However, I would highly recommend that you do what ever you need to get your treatements done. I have told my immediate boss about the laser treatments and that I could not function in the working environment while I'm healing. I don't exactly tell them the reason for the laser treatments, just that my doctor says I have to have these done for a "growth."

For the mom that makes her son go out in public... While this is ok for a YOUNG person, this completely changes once you hit puberty. My parents were very supportive while growing up and always told me how beautiful I was and that I was special. HOWEVER, once you hit puberty nothing you can say will help his pain. Once I was 11 my mom saw how much pain other children caused me and took me to a makeup artist and showed me how to cover it, so I could have a normal life. I honestly believe that if I had not learned how to cover it up, I would not have the life I have today. I of course have become the master of this. Unless this PWS in on you, you will never fully understand how painful it is to have it and how it disables you in ALL areas of your life. My husband did not see my birthmark until about 4 years into our relationship. Of course he tells me that it doesn't matter. BUT again, unless you are walking around with it, you will never understand how it feels. Good luck with your son's treatments and my prayers are with you both.

Flora 09-08-2009 07:52 PM

I can relate
 
I'm a 56 year old woman with a large port wine stain on my face that has become raised and marbled over the years. I had many laser treatments (years ago) while I was working (now retired) and took weeks off work because of swelling and difficulty putting my make-up on over the swelling. I worked for a federal agency that was understanding, and I used my annual, sick, or unpaid leave for the treatments and recovery. It always amazed me how the doctor would tell me the recovery was nothing, and I could be back to work in a few days when this was far from the reality.

Of course, none of my comments answer your question about applying for FMLA for intermittent leave for treatments. I am sure you have research the subject and it might even be worth seeking some legal counsel to determine if this is a viable option.

kaykay 10-21-2009 11:32 PM

i can't help much neither but i just wanted to say i've never worn make up but i leave the house every day pretty much cause i have to whether i want to or not ! even with a cracked lip or scabs from pimples that i know may very well bleed and its gonna freak me or someone else out.

I do agree that you should tell your co workers. You need their understanding. Especially if you think you need that time off.


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