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Posts: 44
From:San Antonio, TX USA
Registered: Aug 2000

posted May 15, 2001 08:49 PM     Click Here to See the Profile for Lisa   Click Here to Email Lisa     Edit/Delete Message   Reply w/Quote
I hate to have to ask this and doubt I'll get any responses, but I'm doing this for my son (he's 10 months old) who has EHK.
At the urging of the neonatologist, I did not have my son circumcised. He said I could have it done when my son is a year old. I wonder if there are any benefits to having it done considering how quick the skin builds up or should I just leave him the way God made him. Anybody who has EHK and can give me advice, I would greatly appreciate would my son.



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Keith Charsha

Posts: 466
From:Southern California U.S.A.
Registered: Aug 2000

posted September 28, 2001 07:24 PM     Click Here to See the Profile for Keith Charsha   Click Here to Email Keith Charsha     Edit/Delete Message   Reply w/Quote
No offense, but what are you talking about? Yes, being circumsized would "remove" some of the skin effected by EHK but may cause more pain in the future then you realize. Scales will not grow on the inside of the uncircumsized skin and therefore is much less painful. However, scales will grow on the end if he is circumsized, resulting in pain from pants, underwear, diapers and even just urination. I wouldn't worry about him being "like other boys", no boy ever asked me if he could see it and I wouldn't have shown it anyway . Leave him uncircumsized, he can always have it done later in life without the worry of infection being so great. I have EHK and speak from experience. If I remember correctly, I wrote you on this subject lisa, thank you for writing me back.

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New member

Posts: 2
From:oakland, ca, usa
Registered: Jan 2002

posted January 31, 2002 12:41 AM     Click Here to See the Profile for marksjunkemail     Edit/Delete Message   Reply w/Quote
Lisa, unless it's a severe case, I wouldn't worry about it (the circumcision, that is). I think your son may be just fine either way. I've had a mild case of ichthyosis all my life. Using AmLactin it's almost unnoticeable. But left untreated parts of my body are affected greatly, including my legs, arms, feet, hands, sides, and back. However, parts of my body are not affected at all, including my face, palms, soles, chest, and yes, my privates. It seems unlikely to me that your son will have to deal with a buildup of scales near the foreskin, unless you are already observing this taking place. However, if what Keith described has actually happened to him, clearly it's possible to experience discomfort in this area due to development of scales.

I am not that informed about the different classifications of ichthyosis, but from what I understand, there are certain parts of the body that aren't affected except in the most extreme cases. I would try two things:
1. Communicate with other men on this list who have had extreme cases and ask each one if circumcision made (or would've made) a difference for him.
2. Ask a doctor to do his homework (i.e. some research) and talk to another doctor who's seen a severe case of ichthyosis up close and find out whether ichthyosis is a good medical impetus for circumcision.

Regarding the appearance, trust me, most men are proud of what they've got regardless of whether they are circumcised or not. Much more important than whether they've got a tiny flap of skin is whether they are raised to be happy, confident, and self-assured.

I'm circumcised and don't have any ill-effects or miss my foreskin. I also don't have any scary memories of it happening. Most likely, unless you observe it, your son's ichthyosis will not affect that area. Unless it's causing him some discomfort now (in which case you shouldn't hesitate to do something about it), I see no reason not to wait and keep and eye on it while you gather more information.

P.S. I can relate to your concerns as a Mom. My mom used to get scowled at by strangers who thought she didn't keep her baby clean. It wasn't dirt, it was just scales from the ichthyosis. I hope your son is as lucky as I have been to find a treatment to keep it under control.

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