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#20948 - 02/26/08 11:16 PM Body Image
Raven544 Offline

Registered: 01/09/08
Posts: 29
Loc: Ohio, USA
Being a 19 year old female, of course my body image is flawed. And surely, this skin disease (I can think of no better word to describe it) isn't helping things at all. It makes me wonder if it's even worth bettering my physical self at times, because this is incurable and impossible to improve, it feels. So what if I get my teeth whitened and straightened? So what if I get thick, long, brown hair that behaves? So what if I grow a few inches taller? So WHAT if I lose 15 pounds? I'm still going to be a disgusting freak who can't show an inch of skin for several reasons. For one, I'm tired of people asking to keep a few scales as a souvenir. Tired of being offered or advised to use lotion. Tired of putting on thick layers of lotion to disguise the scales, make them teporarily transparent, which makes me sweat like a pig and get terribly conscious about any possibly smell that I could be imagining.

This is a really big issue with me. All girls want to be attractive, we can agree on that. But you can't worry about whether the big crater in the front lawn when there's legends of a mass murderer having lived in the basement, can you? You can fix the place up nice, maybe give it a new coat of paint, but no one will ever buy that real estate. Through no fault of your own. (Forgive this very imaginatively-active analogy)

This whole struggle is just so...draining and defeating. It was a huge problem in school. I'd be too worried about my hair, skin, weight, to think twice about grades. And by the time I decided that I'll ignore the skin issues, I'd already dug myself a hole I couldn't get out of. I've had to repeat grades, I've failed final exams, I've had to do summer school, I've had to do correspondence classes. I was ranked 117 out of 140 in my grade. Pretty humbling and shameful, no? And this is before I mention my attendance, with all those days I just couldn't drag myself out of bed. So now I have virtually no employment or college prospects.

BLAHH I'm whingeing again. And that is a waste of forum space.

So I'll stop here and let you guys add your own anecdotes.

#20949 - 02/27/08 12:19 AM Re: Body Image
Kotick Offline

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
G’day Raven,

First of all, I would like to say that your honest and open post is far from a waste of space on this forum; in fact it is one of the reasons this forum exists. If you can not be open and honest about your feelings here, then where can you?

I don’t profess to have all the answers to your question nor the solutions to the issues you have raised, but if I may, I would like to make a couple of suggestions.

As far as your skin goes, I have been relatively vocal at times about not spending too much time on the cosmetic side of your skin care regime; life is far too short for that! This doesn’t mean you shouldn’t try to look your best because you should. Afterall, everyone will notice if you have done your hair, showered sometime in the past week and are wearing clean clothes. That said, when it comes to our skin I believe that we should place a high importance on skin comfort and health, and leave it that. Yes we look a bit different, but so what? Everyone is different. If we can learn or maintain the knowledge that whilst our skin is different, it doesn’t define who we are or limit us unless we allow it to; we can lead happy, productive and satisfying lives.

This brings me to your final and most important issue, where you find yourself now (in your life). You may not have had the stellar success in school that you wished you had, nor have employers lined up outside your door, but you can choose to move forward with your life. It is important to remember that life is an individual journey, a journey where we have the power to decide where our life leads us. It makes no difference what your peers are up to, or where you thought you might be at your age, because tomorrow is a new day.

One of the greatest lessons in life is that regardless of what situation you find yourself in, it is important to keep making decisions and follow through with them. You may not always make the right decisions, but if you keep making decisions whilst staying true to yourself, then you will eventually end up where you truly want to be. (If you don’t believe me, then ask Jerry Bruckeimer, because constantly making decisions is his mantra and look where it has taken him)

So Raven, please let this post of yours become the first step forward in a new segment of your life. You are only 19, you have your best years ahead of you and I am sure that many people who patronise this forum would be more then willing to help you to find a happier way of life. I sincerely hope that you make the decision that you will move forward, that you can make college and a great career part of your life if you wish to, that you can find a loving partner; and most importantly, you will learn to love life and enjoy all that it has to offer.

Take care of yourself and keep smiling,

Jeff (30 with Lamellar Ichthyosis)

PS Feel free to contact me at, because I would be more then happy to help you ;o)

#20950 - 02/27/08 10:20 AM Re: Body Image
immystique Offline

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
((((((RAVEN)))))) Hugs to you!

First of all, rather than thinking of ich as a disease (it's not), it's simply a genetic condition that can be managed.

I'm sure you are a very attractive, smart woman, but your mind and low self-esteem are getting in the way of that.

You just showed in your post that you have a very active, awesome imagination. You're worried about the fact that no one will like your house because it was once inhabited by Jack the Ripper! But on the contrary, there are TONS of people out there who would JUMP on the chance to visit your house just because of that reason!

To the people who care, your skin doesn't matter. Get some FIRST cards made up (there are some excellent ideas on the Parent Boards). And when someone asks for your scale as a souvenir (I have never heard of that one before--that goes above and beyond the point of rudeness!) you can give them a card instead.

Unless they're being really dumb, then give them a comment that snarky little me can't resist when people are so blatantly rude: "Can I get a lock of your hair? I wanna go home and clone you so I can teach the new you some maturity and consideration for others who have a genetic condition that they cannot help!"

Like Kotick said, think of this as the first day of the rest of your life. You can still go to college, and even get financial aid. Go to your local university, jr college, or community college and meet with a financial aid advisor. They'll help you. I used to work as a financial aid advisor for a private college, and I was able to help people who barely passed their GED receive financial aid for college.

Or if you don't want to go to college, start looking for work. Granted, you won't start off with the big bucks right away, but you gotta start somewhere. During the last 10 years, I worked my way up from washing tractors for $6.00 an hour at age 18 to a grant writer making $17 an hour at age 28.

I have a friend who, due to too much drinking, drugs, and partying in high school, dropped out at age 16. She just received her Master's Degree in History last August! She said she mainly did it to prove to herself that she wasn't dumb--she wanted to change her life, so she did.
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

#20951 - 03/01/08 02:43 AM Re: Body Image
pauline5 Offline

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Oh Raven, I hear what you are saying especially about the odour to the skin.

Listen, first of all, you are not disgusting...You are a unique individual, who has different skin to most is 'different', NOT freakish.

Who has the right to call our skin freakish...that is rubbish, there is a reason why we have it...and as far as I am concerned, it is only 'different' because there are not enough of us going out in the world 'showing it off'.

I have never tried to hide my skin, I go to uni in singlets, and don't care if my skin falls off all day. I am proud of my skin, what is there to be ashamed of, it is all I was born with, it has been with me all of my life, so you have to learn to accept it.

Raven, if and when you come to the point of acceptance, then you will have a huge weight lifted off your shoulders and mind...Truly, you will then be able to go about your life, not worrying that it offends people.

I grant you the concern about the smell, as this is still an issue for me today, that is THE ONLY PART OF ICH that bothers me...and that is why I am putting up with being on Neotigason. People and doctors are commenting that the smell IS GONE...

I think the problem you have at present, (however understandibly given your age) is that MAYBE you are comparing yourself to your peers, and friends. This is getting in your way of achieving what you want to achieve. As Jeff said, be yourself, if you can get yourself out the despair of depression, then people will be too busy envying your determination and renewed energy, to be worrying about your skin. As they say 'it is all in how you carry yourself, not how you look'.

I would also consider moving out of the home you reside in, if it is getting you down that much...IT might just be the catalyst for your depression, causing you to feel so hopeless about your skin and life. You may need a change of scenery...something brighter and more positive...

Do you have people around you who you trust to talk about how you feel? Apart from here of course (BB)...I just wonder if you need to speak with someone who can help you to feel better about yourself, and see the light at the end of the tunnel (so to speak).

Jeff is one wise boy! he would not lead you astray, listen to him...
And Immystique I love your comment about the lock of hair...hehehe

Love Pauline

#20952 - 03/03/08 12:05 AM Re: Body Image
Promiseland_dup1 Offline

Registered: 02/13/03
Posts: 536

Take this advice from a middle-aged man who wishes he could have done things differently in his teenage years and in his twenties: Whatever burden you have to carry because of ich, you still got to make a living to feed, clothe and house yourself. And the more money you have, the easier your life will be. It is not too late if you have screwed up in high school. THIS IS THE BEAUTY OF AMERICA. In most countries in the Old World, if you did not prepare correctly the first time in adolescence you will not be able to go to college. That is not the case in the States. That's what JCs are for. And going to college is the best chance (not guarantee) that you could make a decent living. So, start today to make plans for a nearby junior college and take the remedial classes that you need.
Don't ever lose hope when
there is a promised land, and "sweat" dreams

#20953 - 03/06/08 08:17 PM Re: Body Image
tinat Offline
Junior Member

Registered: 03/06/08
Posts: 1
Loc: london, ontario, canada
i don't really know why im doing here really
i always thought i had really bad skin on my legs, i guess im fortunate to only have it on my legs but i've been hiding them forever
i dont wears shorts i dont wear dresses without dark nylons
it really sucks i cant/ wont show my legs at the beach
im really self concious
i wish there was just a cure or something to make it look alittle better so i can wear shorts!!
i dont know anyone else with this! so its good that you gusy are out there!

#20954 - 03/27/08 12:45 AM Re: Body Image
CowgirlGina Offline

Registered: 01/15/07
Posts: 31
Loc: California
Just to put it out there...

I used to be very self concious about my skin everywhere, especially my legs too. But, after reading someone's post on this site about how if you try to hide you skin, people will ask you more about it. If you just wear whatever you want like shorts or dresses or skirts then people won't take as much notice or they will leave you alone because it shows more. Most people believe it or not, are smart enough to shut up and act as if nothing is wrong. The most they can do is ask politely or out of concern what is wrong or if you have a sunburn. So if you just think to yourself that you are beautiful and no one can get you down about your skin, or get it in your mind that you are pretty much 'normal' or whatever then you will be more confident in everything. Plus, why not let people know exactly about what you have so they won't ask questions in the first place? They will have to know sooner or later when more people are born with Ichthyosis any way. [img][/img]

So keep your chin up, and try not to worry so much okay? [img][/img]
Beauty is not whats on the outside but whats on the inside...Then why are people so stupid?

#20955 - 03/27/08 05:09 AM Re: Body Image
pauline5 Offline

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia


#20956 - 04/15/08 01:40 PM Re: Body Image
kieran Offline

Registered: 04/15/08
Posts: 8
Loc: Nuneaton, West Midlands, UK
i know how u feel raven

im an 18 yr old male

however i see it as i have the skin condition and its not going away so work with it

if people are small minded then realise that the only reason they have the problem is because they are scared of what is different

but by believing in yourself it will make life go smoother

i work in a gym and do sports because im all about keeping fit because if i dont then the EHK will grow around my joints limiting my movement

do it for yourself

[This message has been edited by kieran (edited April 15, 2008).]

#20957 - 04/21/08 07:51 PM Re: Body Image
peter mackean Offline

Registered: 04/19/08
Posts: 20
Loc: Littlehampton, W Sussex, UK
hi guys, im pete 42 in the UK
i have in last 2 weeks just tried Aplha Hydroxy Lotion from Dermal Therapy in Canada (also available in UK with Advanced Care Products)
guys this stuff is amazing, i'm not promising because different things work with different people and their skin complaints, try it and see the difference, within one week my skin is much clearer and smoother, my condition was pretty bad and now a thing of the past, for the first time in 42 years i love my skin

i apply in small doses all over my skin after a shower, i do not dry off as the wet skin aids the spreading of the lotion, nice and slimey, my skin then dries naturally after say 10 minutes max, no nasty greasy oily residue, and i swear my skin feels great

any one want to email me direct

bless to all
pete mackean

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