I just don't get it

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Originally posted by clueless

I hate to just gripe, but it just seems weird to me that there are have been sucessful permanent treatments if not all out cures for acne, scars, wrinkles, warts, coldsores, psoriasis, rosecea, moles and every other kind of skin problem, but nobody has the foggiest idea of how to stop skin cells from plugging up the pores?!! Scientists have sucessfully mapped the entire human genome, down to every chromosome in an individuals DNA. While I know this research would be better served in finding cures for cancer, AIDS, Parkinsons etc...I cannot believe that there is no medical way to sucessfully stop KP.
Secondly, I just want to say that it is easier said than done regarding "just letting it go. and not letting it affect your life" Yes, I know this is the "idealistic" viewpoint. It would be great if we lived in a world that did not judge upon appearances, or if we as humans did not have egos. By ego I'm not talking conceited. I'm talking about a healthy self-image, founded upon yes, partly physical appearance. If we didn't care how we looked to other people, then what would be the point of showering, or combing our hair in the morning or dressing up for special occasions. We ALL have a certain need for self-validation through our appearance, and our bodies, whether we admit it or not. It is why we diet, workout, women put on makeup, purchase that great coat, cover up the grey hair and yes, despise those little red dots all over our bodies. I know for a fact that my life would be different, if I were not afflicted with severe KP. No I'm not feeling sorry for myself, that would imply that I were avoiding reality, when in fact I embrace it. I am a reasonably happy well adjusted person otherwise, I just hate KP and hate how it affects my self-image. That doesn't mean my self image is based soley upon looks, but it does affect it.

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Originally posted by fellow sufferer and scientist

Believe me I know how you feel about KP. I suffer from it pretty badly, and have for the last 20-odd years. How dearly I would like to not have this ugly problem. I am also a molecular biologist. Although I would like it to be otherwise, science hasn't yet reached the point where we can replace a faulty gene with a normal copy. We're working on it, particularly with genetic diseases that are fatal or life-threatening. There are two main problems. The first is that although the genome has been mapped, we don't yet know what most of the approximately 30,000 genes code for. The situation is made frighteningly more complicated by the fact that some genes make more than one protein, and some proteins are made from more than one gene, so the permutations are almost endless. It will take years to sift through the genes and go through the experiments to determine what gene is involved in what process. We are making progress, we do know the genes that cause some diseases, for example, cystic fibrosis. But I imagine it's going to be a long time before someone gets around to investigating the gene that is involved in KP, benign as it is, although I may just be your girl! The second big problem is trying to work out how to replace a faulty gene, even if you know which one to target. You can't just take a pill. A copy of that gene is in every single cell in your body, and every single cell in your body is constantly replaced with a new cell. Methods that are currently being investigated for delivery aren't working. The body has a reasonably fail-safe way of getting rid of foreign material and new DNA is seen as foreign and the immune system gets rid of it. We just can't do it yet. And then there is the whole ethical issue of genetically modifying ourselves - people are currently pretty up-in-arms about doing it to food, what are they going to say about doing it to people? Anyway, this doesn't offer you any solace, but remember that everyone who has this problem HATES it, and as such a high proportion of the population has the KP, some of us are going to be scientists and maybe one day we'll work out how to get rid of it. I may just be your girl! Keep your fingers crossed

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Originally posted by clueless

Thanks for the informative feedback. Although I am not a scientist (far from it, actually an artist) I do have a high interest in science, medicine, biology. Your knowledgable insight was helpful. The human body is mind-boggling in it's complexities. I definitely didn't want to come across as thinking nobody in the medical community cares about it, as I'm sure there are many doctors/research scientists afflicted with it too, like you. I guess I am just struck by the irony of how we know so much about how the body works, yet so little about the subtle compexities of the building blocks of life. I hate being negative about it. Like I said, I'm a reasonably happy person who enjoys life, learning (going back to get my master's degree)but still stick to my guns about the self-image thing...I know it affects my dating/girl confidence!! Hope you're the one to discover the cure!

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Originally posted by they need to wake up!

i totally agree with you on everything that you have said! they know SO much about the body, so many complex things...can't they simply figure out the stupid keratin plug thing!! im no doctor, but it sounds like a professional scientist would be able to figure out a cure if they bothered to put their mind to it...it's all about $$$! I would pay every single cent i have to be able to just go out like a normal girl wearing a nice singlet, a bikini, etc. I emailed a few med research companys but i doubt they'll even bother reading what i wrote. THERE HAS TO BE A CURE!!

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Originally posted by someone who hates KERATOSIS PILARIS

HI!

I know how you feel, I also would think that somebody, somewhere could FIGURE this ANNOYING skin condition out since alot of people have to live with it. GOOD LUCK in getting rid of it if that is possible.

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Originally posted by Terri

Thanks for articulating it so well. This disease can and does affect one's quality of life. To say so is only making an observation . . . not feeling sorry for yourself.

Terri

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Originally posted by you're right

Terri, I agree with you that clueless put that very well. Self-esteem and body image are very complex topics and need to be dealt with sensitively.