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 Angry--just a thought
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Jenbabe Member Posts: 19 |
posted March 19, 2006 04:31 PM
  
I dont understand how doctors can change a man to a woman, or vice versa, cure almost ever disease imaginable, cure even some types of cancer, re-contruct someone's face/body etc. make an artificial heart... but cant even begin to think of a cure for ichthyosis.. it just angers me. When half of the dermatologists dont even know it exists. Mine didnt. I figured this disease out on my own. How sad. It honestly pisses me off. --just my opinion. IP: Logged |
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Hearsay Member Posts: 801 |
posted March 19, 2006 04:55 PM
I know you're just venting, but the reality is that ichthyosis doesn't kill (very often, anyway), so there's very little funding to find a cure. Not to mention, most researchers haven't heard of it, either, so they don't know that it needs studied and therefore don't ask for money to study it. And then on top of that, there are political issues that hold up the research that is available. The problem is a genetic mutation in every cell of the body. The only way to cure something like that is like they do with leukemia - kill all the affected skin cells and replace them with unaffected ones. Or infect you with a virus that has been modified so that it will replace the mutation with the normal gene. That's stem cell research, and we have a president in office that won't fund that type of research. Plus a conservative congress and a generally undereducated and conservative voting public. That's a lot of hurdles to overcome. And we really aren't alone. My friend's son, age 3, just died from a very rare disorder that few have heard of and took almost his whole life to diagnose. But the parents of those kids are just as invisible as we in the ichthyosis community are. Jennifer IP: Logged |
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CShell Member Posts: 1135 |
posted March 19, 2006 09:52 PM
A doctor I saw told me that they were working on gene therapy, which would cure ichthyosis. Basically what Hearsay said. But it hasn't been approved in the US. I don't think it's approved for the public's use yet elsewhere, either. But someday it'll happen! IP: Logged |
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victoria Member Posts: 191 |
posted March 25, 2006 09:39 PM
[QUOTE]Originally posted by Hearsay: [B]I know you're just venting, but the reality is that ichthyosis doesn't kill (very often, anyway), so there's very little funding to find a cure. Having read the post it would have come to thought as it is not a killer but more a life long condition the need for a cure or at least a better way of treating the affects would have more importance - after watching my son live with it for only 18 months it isnt nice - not to patronise anybody - but it simply just isnt. IP: Logged |
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Carly Member Posts: 70 |
posted March 26, 2006 05:18 AM
sometimes i get annoyed at the amount of money spent on lifestyle diseases such as heart disease, obesity, lung cancer - cause by lifestyle habits (CHOICES) like smoking, poor diet and drinking. i also get annoyed at people who have these flippant surgerical procedures like gender transplants and cosmetic surgery because they are not people who need to be helped for a genetic disease they had no say in IP: Logged |
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Snowman Member Posts: 10 |
posted March 28, 2006 05:47 AM
If you are pissed off that no one is finding a cure, here's a thought: go to school and help the effort to find a cure. It shouldn't require genius, just alot of effort, and I think the reason why no-one has found a cure is because no-one has put the effort required. Sometimes people have to relate to something, or suffer from something, inorder to understand it's full concept. How many dermatologists do you know that have ichthyosis themsleves? I think it will take a team of researchers that are inflicted with ichhyosis to find a cure, because only they would have the motivation that is needed for such things. IP: Logged |
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