Alopecia

richlevy · 02-17-2008, 12:43 PM

My son's alopecia is getting worse. It started a few months ago with alopecia areata when patches of his hair began falling out. It's moving towards alopecia totalis.

At this point Jeff's hair is mostly gone, with long wisps on parts of his head. We've asked him if he wants to get his head shaved, but he has refused. I've even offered to get my head shaved along with him.

He's wearing hats a lot, and trying to hang on to what he has. Coupled with his autism, this is a terribly raw deal for him.

We've been unable to get a diagnosis on the specific cause, but there is a genetic link to alopecia in our family.

We might be trying Minoxidil, but that's a lifetime commitment and I don't know if he could keep up with it.

I'll keep watching the UofP study mentioned in the other thread. Maybe in 5 years there will be a long term solution.

DanaC · 02-17-2008, 01:32 PM

Ach Rich, what a horrible thing for him to have to deal with. Life's hard enough. Sounds like he's handling it quite well though?

Clodfobble · 02-17-2008, 02:34 PM

Have you tried letting him watch a lot of Vin Diesel movies? Maybe he just needs to see firsthand how having a shaved head can make him totally badass.

Aliantha · 02-17-2008, 04:16 PM

How old is your son Rich? I can't imagine how tough this could be for him, but there are a suprising number of kids that have to go through this. Have you looked into support groups or anything like that?

My cousins daughter goes to school with a girl who has lost all her hair. apparently she's found a way not be bothered by it somehow. She's about 9. Kids are pretty amazing, especially when they happen to be lucky enough to have loving and supportive parents.

richlevy · 02-17-2008, 05:52 PM

Quote:

Originally Posted by Aliantha

How old is your son Rich? I can't imagine how tough this could be for him, but there are a suprising number of kids that have to go through this. Have you looked into support groups or anything like that?

Jeff is in his early 20's. As far as support groups go, the alopecia groups I know of are mostly for women. I don't think I'm going to find an autistic alopecia men's group.

Aliantha · 02-17-2008, 05:55 PM

Ah ok. I thought your son was younger for some reason. That's a pretty rough deal for him still though.

Sorry my only idea wasn't much good to you.

richlevy · 02-17-2008, 06:27 PM

Quote:

Originally Posted by Aliantha

Ah ok. I thought your son was younger for some reason. That's a pretty rough deal for him still though.

Sorry my only idea wasn't much good to you.

I really appreciate your trying. Jeff does ok in many ways. He has a real part time job, and we all go on vacation together. In a few months he's going to Vegas with us. We have been to meetings with parents there whose kids are almost %100 disabled and have an almost zero quality of life. Jeff is otherwise healthy and employed and seems mostly happy, so we count our blessings. It just sucks when your kid hits a roadblock that you are powerless to help them with.

I am hoping that Jeff will let it go and get his head shaved. Seeing him try to hang on to what's left is the worst part of it, but it's important that we don't try to force choices on him in something like this.

Aliantha · 02-17-2008, 06:40 PM

Well, maybe he will shave it in time. I'm sure he just needs to get his head around it. Sounds like he's lucky to have you as parents.

I wish you luck with this new challenge mate. Hope it's only a small bump in the road ultimately.

deadbeater · 02-17-2008, 07:08 PM

Take him to see MacBeth, especially Patrick Stewart's one-man version.

rustler · 03-05-2008, 10:23 AM

My experience has been the hair falls out-people go to the Doc who doesn't know why it's falling out-sometimes genetic,sometimes stress-my friends who have had cancer-the worse part is the loss of hair-esp for women-the men-it's a type of man thing-ex-the famous comb over,hair plugs etc. Thank goodness your son is older-in my business travels-a lot of men shave their heads just becuz-no have to-perhaps Jeff will see it looks not too bad-my heart goes out to him.

richlevy · 03-05-2008, 07:13 PM

Jeff shaved his head last night. We had wanted him to go to a barber shop, but he took his electric razor and did it himself.

classicman · 03-07-2008, 03:08 PM

Good for him Rich - He took matters into his own hands. Symbolic if nothing else. Might have even given him the feeling of being in control somehow.

Griff · 03-08-2008, 06:12 PM

Good job, Jeff!

lushchocolateswirl · 03-08-2008, 06:44 PM

Rich if it helps any , tell him myself and my friends find bald men extremely attractive.
Two of my nieces have it, one of which is a hairdresser. (I guess if she can't play with her own hair she's happy to play with others

)
Midnight oil band front man had it and his now a minister in our parliament. I can think of many men who are famous with bald heads. Some of them very sexy

breakingnews · 03-12-2008, 04:55 AM

I don't think I have alopecia per se, but my hair started thinning at 22-23 years old and has gotten significantly worse over the past year. (I be 27 now.)

While I still have hair throughout, I can very plainly see the strip along the top of my head where there will not be any hair in the near future. I have been considering lately whether to shave my head and just get it over with. I could use a new look anyway.

Anyway, it sucks not to have hair. It's embarrassing, and I'm paranoid it'll hurt me in my job hunt.

02-17-2008, 12:43 PM	#1
richlevy King Of Wishful Thinking Join Date: Jan 2001 Location: Philadelphia Suburbs Posts: 6,669	Alopecia My son's alopecia is getting worse. It started a few months ago with alopecia areata when patches of his hair began falling out. It's moving towards alopecia totalis. At this point Jeff's hair is mostly gone, with long wisps on parts of his head. We've asked him if he wants to get his head shaved, but he has refused. I've even offered to get my head shaved along with him. He's wearing hats a lot, and trying to hang on to what he has. Coupled with his autism, this is a terribly raw deal for him. We've been unable to get a diagnosis on the specific cause, but there is a genetic link to alopecia in our family. We might be trying Minoxidil, but that's a lifetime commitment and I don't know if he could keep up with it. I'll keep watching the UofP study mentioned in the other thread. Maybe in 5 years there will be a long term solution. __________________ Exercise your rights and remember your obligations - VOTE! I have always believed that hope is that stubborn thing inside us that insists, despite all the evidence to the contrary, that something better awaits us so long as we have the courage to keep reaching, to keep working, to keep fighting. -- Barack Hussein Obama

02-17-2008, 04:16 PM	#4
Aliantha trying hard to be a better person Join Date: Jan 2006 Location: Brisbane, Australia Posts: 16,493	How old is your son Rich? I can't imagine how tough this could be for him, but there are a suprising number of kids that have to go through this. Have you looked into support groups or anything like that? My cousins daughter goes to school with a girl who has lost all her hair. apparently she's found a way not be bothered by it somehow. She's about 9. Kids are pretty amazing, especially when they happen to be lucky enough to have loving and supportive parents. __________________ Kind words are the music of the world. F. W. Faber

02-17-2008, 05:55 PM	#6
Aliantha trying hard to be a better person Join Date: Jan 2006 Location: Brisbane, Australia Posts: 16,493	Ah ok. I thought your son was younger for some reason. That's a pretty rough deal for him still though. Sorry my only idea wasn't much good to you. __________________ Kind words are the music of the world. F. W. Faber

02-17-2008, 06:40 PM	#8
Aliantha trying hard to be a better person Join Date: Jan 2006 Location: Brisbane, Australia Posts: 16,493	Well, maybe he will shave it in time. I'm sure he just needs to get his head around it. Sounds like he's lucky to have you as parents. I wish you luck with this new challenge mate. Hope it's only a small bump in the road ultimately. __________________ Kind words are the music of the world. F. W. Faber

03-05-2008, 10:23 AM	#10
rustler Person Who Has Posted Join Date: Mar 2008 Posts: 2	hair loss My experience has been the hair falls out-people go to the Doc who doesn't know why it's falling out-sometimes genetic,sometimes stress-my friends who have had cancer-the worse part is the loss of hair-esp for women-the men-it's a type of man thing-ex-the famous comb over,hair plugs etc. Thank goodness your son is older-in my business travels-a lot of men shave their heads just becuz-no have to-perhaps Jeff will see it looks not too bad-my heart goes out to him.

02-17-2008, 01:32 PM	#2
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	Ach Rich, what a horrible thing for him to have to deal with. Life's hard enough. Sounds like he's handling it quite well though?

02-17-2008, 02:34 PM	#3
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Have you tried letting him watch a lot of Vin Diesel movies? Maybe he just needs to see firsthand how having a shaved head can make him totally badass.

02-17-2008, 07:08 PM	#9
deadbeater Sir Post-A-Lot Join Date: Dec 2006 Posts: 439	Take him to see MacBeth, especially Patrick Stewart's one-man version.

03-05-2008, 07:13 PM	#11
richlevy King Of Wishful Thinking Join Date: Jan 2001 Location: Philadelphia Suburbs Posts: 6,669	Jeff shaved his head last night. We had wanted him to go to a barber shop, but he took his electric razor and did it himself. __________________ Exercise your rights and remember your obligations - VOTE! I have always believed that hope is that stubborn thing inside us that insists, despite all the evidence to the contrary, that something better awaits us so long as we have the courage to keep reaching, to keep working, to keep fighting. -- Barack Hussein Obama

03-07-2008, 03:08 PM	#12
classicman barely disguised asshole, keeper of all that is holy. Join Date: Nov 2007 Posts: 23,401	Good for him Rich - He took matters into his own hands. Symbolic if nothing else. Might have even given him the feeling of being in control somehow. __________________ "like strapping a pillow on a bull in a china shop" Bullitt Last edited by classicman; 03-07-2008 at 03:20 PM.

03-08-2008, 06:12 PM	#13
Griff still says videotape Join Date: Feb 2001 Posts: 26,813	Good job, Jeff! __________________ If you would only recognize that life is hard, things would be so much easier for you. - Louis D. Brandeis

03-08-2008, 06:44 PM	#14
lushchocolateswirl Hi just me Join Date: Mar 2008 Location: Australia Posts: 108	Rich if it helps any , tell him myself and my friends find bald men extremely attractive. Two of my nieces have it, one of which is a hairdresser. (I guess if she can't play with her own hair she's happy to play with others ) Midnight oil band front man had it and his now a minister in our parliament. I can think of many men who are famous with bald heads. Some of them very sexy

03-12-2008, 04:55 AM	#15
breakingnews Q_Q Join Date: Oct 2003 Location: somewhere in between Posts: 995	I don't think I have alopecia per se, but my hair started thinning at 22-23 years old and has gotten significantly worse over the past year. (I be 27 now.) While I still have hair throughout, I can very plainly see the strip along the top of my head where there will not be any hair in the near future. I have been considering lately whether to shave my head and just get it over with. I could use a new look anyway. Anyway, it sucks not to have hair. It's embarrassing, and I'm paranoid it'll hurt me in my job hunt. __________________ Gone crazy, be back never.

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