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#1138 - 07/27/02 01:02 AM Re: Accutane
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Firstly, although I have previously aired my reservations, I ultimately agree wholeheartedly with what Tatania and Beth have had to say.

Now for Keith's last post.....I personally feel that it is would be an agonising decision for people to make once they have a choice as to the type of child they bare.

And even worse for a person who already has ichthyosis, as you already know what it is like firsthand, so the decision should be easier in one respect but more agonising in another respect.....As deciding to abort or select a 'perfect' embryo, MAY mean we are placing a negative value on our own lives, or some may view this as being unselfish, and thinking of the unborn child's lifelong physical pain and societal prejudice.....

I decided against having children many years ago, (partly made for me) and have felt guilty about this ever since, even though it was partly based on physical limitations.

Again like the accutane debate, the topic of having children with icthyosis is an INDIVIDUAL CHOICE, and it doesn't matter if outside people oppose it....

Pauline.

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#1139 - 07/27/02 03:20 AM Re: Accutane
dslacker Offline
Member

Registered: 08/26/00
Posts: 61
Loc: Copenhagen - Denmark - Europe
Im not going into all this stuf about Soriatane/acutane etc - suffice it to say that I have chosen against retinoids, since I know the way my body reacts in its present condition, and not how it would react to (over)doses of retinoids. (My history being that I (who has EHK) was briefly forced into Tigazonat the age of 14, and then stopped by my own accord...)

WARNING*******************
The following is potentially very controversial to some, and is my oppinion!!!
**************************
Evolutionary deadends ???

However I found Keith's opening on the discussion on IVF screening interessting.
This is a potentially highly controversial issue, since it borders on everything from religion to individual freedom and possibly the future of our ever evolving species ;-)

Personally Im not into religion, so thats not the issue for me, but I honestly dont like the way that society is evolving into a place where we should all look/think/act/buy/etc/etc the same, which this idea ultimately is a sign of.

On the other hand I DO think that the only solution to speeding up evolution is genetic engineering - wether or not this is desireble is a whole other matter...
So my position is really grey matter here, which is probably a good idea since I dont have a girlfriend/wife. Still, these are questions that I have toyed around, and my thinking is maybe better clarified be some points:

Some of the problems of the parents:
1) Should parents with a potential for children with genetic problems have IVF screening to choose the "most" healthy egg ? or is it actually more in societies interest that they abort ?
2) Should or shouldnt parents have a child thats been fetus diagnosed with a genetic disease ?
3) When baby is born and diagnosed with a disease, then how far should one go in the treatment ?

Doctors /Geneticists problem

1) How far should one go to the "make" the perfect babies that most parents want ?
2) It is much cheaper to induce/force a miscarige on a "diseased" fetus...
3) How bad should a genetic "flaw" be before its something you take into account or "fix"(eg several countries want as few females as possible...)
4) What do the species loose by the potential simplification of the genome, when you fix or remove mutations ?
5) What do the species gain by the potential complication of the genome, if you fix or make new mutations ?

Societies problem (which doesnt coincide with the rest):
1) Who is to pay for what?!

There is no doubt in my mind that IF you fix various genetic disorders without serious sideeffects (BIG "?") then Im all for it. It should however ONLY be with the individuals acceptance of the treatment.
Already here you got a serious problem sine most doctors/geneticists would prefer to treat/fix as early as possible (hence the interest in IVF screening). Ergo the individual in question wont get a say in the matter...

Then there is the matter of wether we in the future even get to decide on this. Recently there was a case in Britain where a married couple of dwarfs had to go to court because they wanted IVF screening to make SURE that their own child would also be a dwarf! Doctors was heavily against, since dwarfism is recognised as a serious illness.

We in the Ichthyosis "community" would most certainly face most of these issues, and I (and Keith/Pauline) have hopefully opened a little discussion on this.

------------------
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
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_________________________
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------

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#1140 - 07/29/02 09:05 PM Re: Accutane
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I know a lot of people taking many of the drugs mentioned in this thread, some with good results, some bad, some utterly disasterous.
As I have mentioned before, I decided not to go on these drugs because I was scared (yes I am chicken!) of the side-effects and the length of time to get it out of your system. My dermatologist, who was on the ground floor of the clinical trials for all of these drugs, says five years is the minimum amount of time anyone should wait after taking drugs like Accutane and Soriatane.
My real point here is the fact that the biggest decision-maker for me was last year when I was informed that if I took Accutane or Soriatane even once, I would no longer be allowed to donate blood. While I find blood donation to be very important and I have done so every three months for over 12 years, I found it very telling that once these drugs enter your system, your blood is considered "untouchable".
If I wasn't a big coward before, I am now!

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#1141 - 07/29/02 10:26 PM Re: Accutane
pauline5 Offline
Member

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

What you have just told us now, is truly amazing.....That makes it even more scary now to think of how powerful these drugs really are.....I am in shock....

Like I said before, it is so cruel that these miraculous drugs on the one hand can cause such devastating side effects on the other......It is so understandable why young people in particular would welcome a drug which can eleviate stiffness, discomfort and embarrassment during the most important active and social times of their lives....

I just welcome the day when some alternative drugs come onto the market which are not Vitamin A derivatives.

One FINAL suggestion from me for Robin and her daughter....if they decide to give the Accutane a go.......Perhaps they should wait until Jordan is a little older, giving her bones time to reach their bone mass potential. I was informed by my general practitioner that bone mass peaks at around age 24 (could be as late as 30) and that being on Tigason between Age 14 and 23yrs, may have contributed to my osteoporosis now.....together of course with the fact that I couldn't exercise during those years either....

I realise that this suggestion defeats the purpose of wishing to trial these drugs during teenagehood....It is just my answer to not discounting it all together if desired, but still PERHAPS minimising the longterm skeletal affects.....

OF COURSE CHECK WITH YOUR DERMATOLOGIST/SPECIALIST ABOUT MY THEORY....

Regards Pauline.

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#1142 - 08/01/02 06:11 AM Re: Accutane
sofia Offline
Member

Registered: 08/14/00
Posts: 53
Loc: Little Neck, New York , Queens
Dear Robin,
I may be late in responding before you and jordan could make the decision about accutane. A couple of things to remember it's your choice, you must do all the testing such as blood work, bone density test and liver testing to make sure all is normal. I can tell you my skin looked great with the accutane. However, after about 1 1/2 on the medication i began having problems with my eyes eventually i developed painful corneal abrasions due to the severe dryness in my eyes. I have been off accutane for almost 3 years and still i suffer with my eyes. This is what I endured on the medication. I don't think I will be using accutane again. I am now hooked on lachydrin and peanut oil. I can tell you that my skin looked for about 2-3 months horrible and was so dry after i stopped the medication. It is up to you but if i was in your shoes i would look into it even more. I too have CIE and if i could go back and make that decision again i would have never decided in taking this.

sofia

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#1143 - 08/05/02 11:58 AM Re: Accutane
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Glori,
I am interested in what your doctor told you about the time needed to be off Accutane.
This stuff is so hard to figure out. I have been told so many different things. I am now 30, will be getting married in 9 months and planned on going off Accutane (it will then be 15 years on the medicine with no time off) for good right after my honeymoon in order to detox for children. I thought two years would be enough. Five years you say. I will have to wait a reasonable time and definitely need to speake to my doctor. Do you have any more information to give on what you were told?
Lisa

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#1144 - 08/13/02 05:13 AM Re: Accutane
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
One of the threads in here where we discussed Accutane and Soriatane points out the fact that the web site run by Roche had been edited and the amount of time to wait for pregnancy reduced. Roche's own web site now says that when you take Accutane, you need only wait one month, which absolutely stuns me. For years the waiting period was several years. The waiting period for Soriatane is three years, which is another surprise, that the waiting periods are so different for two drugs that are not all that dissimiliar (IN MY OPINION).
When it comes to blood donation, the Red Cross' position is: wait three years after taking Soriatane, four weeks after taking Accutane and you cannot donate at all after taking Tegison. I donated blood through Carter Bloodcare in Dallas and they won't take your blood at all if you have taken any of these drugs. The Red Cross has, and I hesitate to use this word, lower standards than most private donation groups. I don't mean that in a bad way, it's just that their waiting periods for everything are lower than anyone else's.
Just for fun, I ran a query over the Internet and learned that most other blood banks won't accept your blood at all if you have ever taken these drugs and an article printed by the National Institute of Arthritis and Musculoskeletal and Skin Diseases Information insists that their patients wait three years after taking any of these drugs before getting pregnant.
As for my experience with my doctor, I was invited to join the clinical trials for Accutane in 1982(?) and I was asked to sign a "legally binding" agreement stating that I would immediately abort if I were to become pregnant during the trial or within five years of stopping the drug. My last contact with that doctor, who was with the University of Michigan and considered a leading Ichthyosis expert at the time, was about ten years ago and he told me that research had not yet shown to him that waiting less than five years was acceptable. Obviously, in terms of research, ten years is a long time but it wasn't that long ago, last year in fact, that the Roche page still advised a much longer waiting period than they do now.
So I don't know what we've learned today, except that I have too much time on my hands [img]http://www.ichthyosis.com/ubb/smile.gif[/img]



[This message has been edited by Glori (edited August 13, 2002).]

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