harry irawan, 55, BOGOR -INDONESIA

hi I am from Indonesia, my son age 12 suffer from crouzon syndrome .... and plan treatment / surgery in adelaide Soth Australia is there who can share their experiences with us ... thanks

Andy, 44, Gloucester

Comment I have fibrous dysplasia. I have been facially deformed all my life. I have never had a girlfriend. I try so hard to suppress my feelings but it's getting harder. I am only alive because I know how much my killing myself would upset my parents and a few other people. I'm waiting for the day when they are gone so I can go too. I'm glad you are not me.

Seham Sulieman (Ali Ahmed mother), 40, Jordan

my son suffers from cruzon syndrom and no doctor in Jordan tell me what to do . please just tell me where to go .

IP, 54, London

Comment Thank you James for this very good and supportive web-site. My grandfather had a very disfiguring birthmark which could not be treated in his day. He had a very supportive family and group of friends which helped him to ignore people's reactions. It was said of him that when you first met him, you were of course aware of the birthmark, but after three minutes in his company you forgot all about it because he was such a wonderful person. His own way of dealing with the situation was summed up in the saying 'Damn braces; bless relaxes'. This is not a reference to braces which hold up trousers, but the bodily reaction as in 'Brace yourself!' If you are constantly angry, it will tell on your body, but if you bless people in your heart, you will find life easier. I think the guidelines for journalists are very good, and the BBC script-writers should know about it too. The Radio 4 afternoon play today (10/6/11) had an supporting character not able to find love because of his facial disfigurement. Not True! I said to myself.

Ci, 41, North Nott's

CommentI have had cystic acne from age 12, on my face, chest and back. I didn't get the treatment soon enough that would have prevented my scarring as docotrs don't take acne seriously enough. For many years I was lost, it ruined my life both professionally and socially. I still have bad days, and thoughtless comments from people in the street still hurt. But I am going to wear what I want from now on, wear make up when and if I feel like it and not to try and put on a mask, and if people are offended or repulsed by my scars they can feel free to look away! My scars don't make any difference to the people who love me and theirs is the only opinion that counts.

MARYLIN RODRIGUEZ, 51, PUERTO RICO

Comment HI I HAVE LIVE WITH MY PORTWINE STAIN AND DISFIGURING LIP SINCE I WAS 12 YEARS IT HASNT BEEN EASY BUT NOT IMPOSIBLE TO CONTINUE ENJOYING LIFE. WOULD LIKE TO SHARE EXPERIENCE WITH PEOPLE AND GIVE THEM COURAGE . MY EMAIL IS maruquita65@yahoo.com Thank you!

Henny , 42, Jakarta, Indonesia

I am a mother of a 10 month bab girl who suffers from crouzon syndrome. I was more than happy when i found this fabulous website. Soon i will email info@changingfaces.org.uk. and hope will have support from this organization.

Rebecca, 24, London

What a fab website and a real source of inspiration and support! Thank you and please keep up the good work :)

jackie, 61, cromer norfolk

Commenti am 61 and never realised there was help out there i have a birthmark on the left side of my face .from scool to work place i have had to deal with other peoples stares and comments all very hurtfull

Melanie HANSON, 31, Leeds

I suffer from cruzon syndrome would like to attend support group

Joe, 47, Madrid

Yes Sandra It would be nice to have a support group llke this in other countries. I livein Spain and like you had a disfigured nose until i was 19. I wish this organiastion had been around when i was growing up the 1960 and 70,s.in England. I remeber the pointing the name calling and the rejection. and wondering why me. Now I am happly married and live in Madrid. My wife could see beyond my looks . I am a school teacher and have never really found it to be a problem. the kids soon forget who u are if u are good at yur job ,Anyway keep in touch. anybody no of a similar organisation in the Madrid

Madeline, 33, London

Living with Moebious Syndrome is very difficult specifically because of the lack of awareness, even from doctors. I had to change country in order to be able to survive i.e. find a job and therefore it is essential to point out how important this organisation is. I seeked advise in Changing Faces first time in 2000 and from then it has played a big role in my life and my transformation to a more confident person. It also helped me to direct my anger effectively and be able to pursue my professional and personal dreams. Keep at the good work!

Magda, 22, Poland

it's very interesting webside!

Sandra, 20, Sydney

I had a disfigured nose until surgery at 15 and suffered much because of it. I heard of this website through your advertisement campaigns and it brought back so many memories. In a way, it was cathartic. So I would like to thank you for this website and these facilities, knowing that there is an institution helping people with similar, or worse, experiences (such as children pointing you out on the street and being scared) is very comforting. I only wish there was a similar charity in Australia.

Changing Faces, London

If you are struggling to cope and you would like to speak to someone in confidence, please call 0845 4500 275 or email info@changingfaces.org.uk

donna, 43, leicester

I am finding things so difficult. Its gettimg harder to be me.Idont know anything about new treatment. Ihave never talked. I tried suicide once. Still no help.I have just found out the skin on my birthmark can become worse.I need help.

Evan, 29, Suffolk

I was inspired to seek further information after hearing Henrietta on a BBC radio program with Claudia Hammond this week. Listening to Henrietta 's articulate and charming interview, as well as spending time on this website has increased my awareness and compassion for others in this hard and fast modern world.

SJ, 39, Cambridge, UK

Thank You!

SJ, 39, Cambridge. UK

Changing faces has been instrumental in helping me see the world beyond my disfigurement. i attended changing faces in the early phase of its development and i am delighted that James original idea is now a thriving organization. The knowledge and skills acquired on attending the workshops has resulted in my empowerment. i spent much of my childhood and early adulthood with the feeling that i was a far from perfect. i realize that my disfigurement is an important part of my physical appearance and i am a beautiful woman with a wonderful personality.

D.C., 40, USA

Experience I grew up with a facial port wine stain that changed at 13 and the vascular malformation in my nose caused the skin to grow uncontrollably. I had a very difficult time growing up in the US - people are cruel. My mother taught me to be kind in response, but I didn't want to - I was angry by the treatment and being nice didn't make me feel any better. But obedience was really important. I learned that people saw past the mark when I ignored their comments or reacted positively. Did that stop the bullying? No...but it helped because I had friends in just about every social group in school - and they would come to my aid. I have had multiple surgeries due to the dangerous possibility of an uncontrollable external bleed. I still wear makeup - though sometimes I will go out bare faced in a rush and not care. Strangely, those are sometimes my most confident days. Thank you for this website. It is extremely inspiring to me. I am proud of each person who bravely faces each day in a harsh world. God bless you!

lugonwa isma, 31, stoke on trent 19 clynes way st3 6js

Experience i have had bell balsy almost all my live any help and support

Lorna, 17, Scotland

I recently saw Jess' documentary on BBC Three and I found it really interesting. I just wanted to say you have my full support and your website is reallly great :]

jamie, 13, saffron walden

I have frekles all over my face and I dont know if its a disfugerment

Call for comments