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tianasmama 04-14-2010 06:06 AM

New to the website adult with PWS
I understand this forum is for support... but I really just want to say the things you parents are putting your kids through is awful. At such a young age you have babies and toddlers going through laser treatments on a PWS... for what?? How about you let your child grow up some and make that choice for themselves.. it seems like most parents push the issue all because they are afraid of what someone else might think or say about their child. This is why society is the way it is.. why can't people just be accepted for who they are not what they have thats not "normal". I went through 4 laser treatments as a teenager and it was all for nothing, my specialist later told me that PWS is broken vessels under the skin that will keep filling up with blood and never would my birthmark be completely gone. Its a painful procedure and I would never put a child through that... people can be cruel no matter what even when I was adult and became pregnant a lot of peoples first question about my daughter was will she have a birthmark?? Does that really matter birthmark or not we are all still beautiful, I know i'm going to offend someone by posting this but oh well its just how I feel PWS cause no harm in physical appearance we are all made different!

missy 04-14-2010 12:28 PM

The other two posts you made were supportive, but I think you're wrong to tell parents that what they are putting their kids through is "awful." As a patient with pws ages, the birthmark can cobble and bleb, leading to complications. People aren't treating their children simply because of the social pressure to look a certain way. PWS that are treated correctly and early in life can avoid a myriad of complications later in life.

Most parents on the support forum are here because their child has a large PWS, like yours. They get conflicting information from their doctors about how and when to treat it. But they are treating it because it's their job as parents to make sure their children are as healthy as possible, even later in life.

It isn't all about looks. Those parents who don't need their children treated or are getting good information from a doc they trust are, guess what, not here.

So, yes, this was and is offensive.


tianasmama 04-14-2010 06:48 PM

ok so the parents saying they cover up their kids with a blanket in public... or are afraid to have more kids because they are scared they will get another child with a pws.. I guess thats because they are concerned for their childs health right?? and how at a young age can doctors predict the future?? you don't know what might happen either getting it treated or leaving it alone and just waiting to see.

missy 04-14-2010 08:52 PM

Yes. We get more questions on those two exact things. Sun exposure and PWS and heredity and birthmarks.

I will agree that there are a few (but very few) parents who cover their child's PWS, but it is mostly because they get tired of dealing with the stares and rude comments from others. It isn't because they are afraid of being judged for having a child who looks different. It's because they need to get an errand done without having some a$$hole break their hearts with some stupid comment.

Those people who ask about having another child with a birthmark have every right to be concerned. Those parents have valid health, family, and financial concerns. We (meaning my husband and I) have a child with a disability. It is not proven one way or the other that this disability is genetic. We are scared to have more kids. Why? We are struggling now to pay for treatments. We have a valid financial concern when it comes to a family issue like that.

No one knows what might happen in getting PWS treated or not, you're right. But a responsible parent weighs the options and makes an informed decision and that is what we try to help with. As I said, those parents who don't struggle with that are not here... they don't need our help or support.


kaykay 04-20-2010 03:32 AM

i understand and respect your opinion tianasmama but i do not agree with it.

My father saw my birthmark as a sigh of his infidelity while my mother was pregnant with me, an held my face close to his chest. That was wrong. I was a baby and i would not know who was starting at me.

My mother has always blamed herself for my birthmark. Was it something she did wrong ? she had a miscarriage that may of been due to the chemcials that were sprayed on the cane fields that she had to drive threw every day.

Yes parents will be concerned about the stares their children get. The comments. The teasing. How can they prepare their child for all that ? You can't really, only try.

PWS affect MY health. It affects my mental and phyiscal health. Its grown. its been left untreated for many years. I do not have the best of health. If my mother had been able to pursue treatment maybe my birthmark wouldn't bleed when i pass my hands threw my hair, the pimples would heal faster and not leave scarring scabs on my face. Maybe i could drink soup in public with my confidence. have hearing in both ears. Not have to worry about straining my neck for fear of a high temperature fever and swelling that just takes a couple minutes to happen and leaves me flat on the bed for days unable to do anything. Maybe i could of been able to play body contact sports ! I love boxing. Not have to feel the blood pumping and look down my face an my cheek and lip pulsing on a hot day. I wouldn't to worry about the men i go out with for fear they are gonna pong someone into the ground because of someones stupid comments. Wouldn't have to worry about my face suddenly bleeding in public and wondering do i have enough tissues in my handbag. I wouldn't to answer that question " what is that on your face " or hear two kids says " look the monster coming ". I'd be able to speak better. Wouldn't question myself do i have a learning disablitiy. oh wow the painful ear infections i had growing up !

I could go on.

I think you are wrong to say its awful what parents put their kids threw. I think it is love and concern and parents have every right to do what they can with their children's health.

it took about 7 nurse's to pin down my ass on a hospital bed when i was about 3 for treatment. screw that needle ! I wanted that chocolate easter egg i saw lying around. I'm sure it pained my mother to see that but i know it was for my own good.

ya know what ? I'm not the best of people but some of my expeirences have made me stronger in some ways. I never once had a fight because of my birthmark. Emergency ? you call me for a cool head. I credit my PWS for that. I watch documentaries and see beautiful young women would rather have breast implants than a place to live and i tell myself i thought I had issues !

But not one day goes by that i don't ask myself what am i going to do with my birthmark. Its grown. Its worse. How can i get treatment. I live in the wrong country. I do not have the money. I want treatment. I need it.

Thats just me. Everyone is different. We all have weakness and strenghts. Some people handle things better than others. I am more on the down side. I have a birthmark an it sucks. I'd rather not have it, i just have to live with it and pretend everything is fine for other people not to feel bad.

As for my mother, I know she's frustrated every day. She looks in on me all the time with i am sick checking to see if her 32yrd baby is still breathing.

That, is what parents go threw.

so please, while you are intitled to an opinon, keep the parents feeling in mind. You might end up getting the attention a mother bear protecting her cubs !

My understanding is PWS should be treated as soon as possible. Who can fault a parent for wanting to give their babies the best chance to survive in this world as long as it helps and is no danger to their health. babies are given shots for measles but theirs no gaurentee they will ever be expose to it in the first place.

and thats my five cents :D damn. to think i don't talk much. But i really felt like i should say something

missy 04-23-2010 02:00 AM

Oh, you're hilarious! I saw that same documentary about the woman who was saving for a house and got breast implants instead of using the money for the down payment on a house!

I'm a huge Discovery Channel fan... it's distracting!


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