Participate in PWS study

Hi everyone,

The design for my thesis study is ready! This time I am focusing on PWS specifically. The goal is to be able to say more about the uncertainties and informational needs people experience as they cope with this lifetime vascular birthmark condition.

I am again asking for your cooperation. I developed a questionnaire (very similar to the previous one) that you can link to here:
http://www.surveymonkey.com/s.asp?u=577953036963
Please see if you can find a moment to take it! Your participation is highly appreciated!! It should take about 15 minutes, anonymity is guaranteed.

For those who don’t know or remember me: I am a Master’s student in (health) communication at San Diego State and also have a 3-year old girl with an extensive leg PWS. I have some first hand experience with the rocky road that coping with PWS can be.

To get an idea of my work, please click the link on the VBF homepage to see my paper on the experiences of people affected by a vascular birthmark, their uncertainties and how they find information and support.

Thanks so much,

Liesbeth

Hello, Ive been on this site for months, but have only just started replying!!!

Wod, your questionnaire was amazing, it had every feeling I go through on a daily basis. .

My baby was born with extensive pws on her right arm, hand, shoulder, chest and top of her back. We were originally told 3 days after id had her (it took them that long to tell me she had a problem, and because she was jaundiced I never noticed it)!!! she had an elephant man type syndromme and the vessels leading to her arm would have to be cut!!!! (I asked the midwife who handed my baby to me, after my c section, did you notice it, she said she did, then WHY THE HELL DID NO ONE TELL ME!!! I had to ask to see a doctor. the next day we were seen again and told she had a pws and her thumb was a haemangoma, we were then referred, when we were told no it was all port wine stain, and to go away and stop worrying and they would start laser at aged 18 months. When I asked was her pws arm a little longer, the doc said,oh dont worry theres an op I can do for that!!!! when i asked what it was, he said dont worry, its very simple now go and enjoy your baby!!!

I went away, FRANTIC, I trailed every website going, got all my information together and found a fantastic vascular abnormalities team, I rang them up, told them I thought she may have Klippel Treanany syd, had read that the earlier the laser the better, I was seen the next day and they agreed with all I had told them and put me on the next available list for laser!!

I feel so full of knowledge now that I get frustrated by the medical profession, ie my gp did not even know what kts is!!!!! My daughter recently attended accident and emergency as she had a very high temp, the docs asked me did she get the rash appear with the temperature??? When she was seen by a paediatrician at the hospital he said oh ive only ever seen one of these in my whole career. Basically my daughter had a non blanching mark on her leg and they suspected meningitus. They kept her in for 3 days and luckily it was just a nasty virus. When I asked could the non blanching mark of had anything to do with the PWS, ie her internal venous system, he answered well i dont really know!!!! My god!!! I felt desperate.

I struggle with this so much, me and my partner feel so alone, none of our famillies understand how we feel so scared for maisie, how she will cope with it, will she hate it, will she feel different, will she blame us. All they say is get a grip and she wont die!!! I cant stand the thought of my baby going through a general aneasetic but i know i have to give it a shot. I recently had a nervous breakdown because I felt so desperate, so sad, so guilty, i couldnt stand people looking at my prescious baby.

The work you are doing is amazing. By God how it is needed. I would love to assit you in anyway I can. I feel very passionate that people should get EARLY DIAGNOSIS, support, help

My email address is

tracy.hitchen@ntlworld.com

I am (nearly) a qualified counsellor, however it has not helped me in being able to cope with this awful journey. I would take the mark from Maisie tomorrow if I could, Im angry, i just hope time will heal

Thanks and good luck with your work.xx

Hi Tracy and everyone else,

Sorry for the late reply. I was out of town to care for my mom who broke her hip!

Tracy, I and lots of other people in our community can surely relate to what you describe. Me too, I have often felt very anxious about Fenna's PWS situation, the possible complications and KTS risk, and angry about the lack of understanding I sensed from both our environment and the medical community. I think a lot of us know how people around us seem to think "why are they making such a big deal out of it?"

Now, after three years of living with our daughter's PWS, the initial *shock* has worn off somewhat. I don't expect understanding from the people around us anymore, but instead, try to *educate* them if they are interested. When I look back, I have to say that what has mostly helped me is reading these online messages from others, here and on birthmarks.com (and there are other great groups, too). Reading the stories and sensing the attitudes of others who have been in comparable situations has brought a lot of relief.

Initially, my study was motivated by the idea that there is not enough information for people like us to help them ease their uncertainty about what is going on. I still think, at first confrontation, that this is is a big deal. So much depends on getting the right diagnosis early, and a good explanation of what PWS means (e.g., associated syndromes, possible future complications) and to be offered appropriate options for treatment.

Now, since working on my studies, I have also noticed the importance of the phenomenon "information overload," anxiety/uncertainty caused by continuously looking for information or trying to get THE answer to our individual situations. What has helped me, personally - and I hope people can relate - was accepting that there will always be "unknowns." This enabled me to let go a little. There is no one *perfect* road to walk. Of course, it is much easier to *choose* this attitude when you have enough base (medical) information.

Then, like I said, I think it is "the information of similar others" (such as you can find, e.g., here and on birthmarks.com) that helped me most.

Tracy, I wish you - and all other new parents here - lots of luck on your PWS journey! E-mail me any time!

Liesbeth

A big THANK YOU to everyone who has taken time out of their schedules to take the PWS survey on uncertainty and information.

If you haven't done so yet, there is still time!
Please click to http://www.surveymonkey.com/s.asp?u=577953036963
The survey takes about 15 minutes.

I appreciate your participation!

Liesbeth
Mother of Fenna (3), PWS on right leg