Really Need Immediate Help

I've received some great advice and support on here and am so appreciative that this site exists. I remember being on the message board that a doctor (Manuel, I think) created, and that was a lifesaver when my daughter, Kait, was diagnosed in 3rd grade. Well, she is 19 now (tomorrow!)and all these years she has had hair come and go but always been able to cover the spots by wearing a pony tail. Now though she is in a massive hair loss period and came out of the bathroom crying yesterday saying that she just couldn't cover the spots anymore. Truthfully, I don't know how much hair she has left since she has all the hair framing her head and pulls that back but I guess the hair loss is in excess of 50%, and it just keeps going. She is afraid to wash her hair, she says, because she loses so much each time.

The road to acceptance is a slow, painful one, but I think we are moving along it, each grieving in our own way but generally coping. The time for a wig has come and she needs to do something fast. It is really important to me that this first experience be positive so while I could get something off the internet, I would prefer being in the hands of an experienced consultant. I've read about bonded toppers and think this would be great since she is going to college in January and living in a dorm so to have something that she didn't have to take off at night would be perfect. I suspect though that this isn't realistic since she is in an active period of losing hair. I just can't imagine her being comfortable taking off a wig at night and keeping it on a head (whatever they are called.) I guess she'll have to get over that.

I've identified a salon on Philadelphia's Main Line, Jude Plum, that specializes in hair pieces, and I will try to get an appointment right away. Can I expect to go and get a piece that is available immediately, or is it usually a series of appointments? I am willing to go to New York as well if there is anyplace there that is particularly great.

I'm sorry that I'm not even sure what to ask. I am finding this pretty overwhelming.

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Permalink Reply by Lisa F on November 30, 2009 at 1:30pm
Thanks, Mike. I wonder if we should get something cheaper to wear until a custom piece is ready. But then I'm back to not having the first experience a positive one. On the other hand, lots of the experiences I read about on here aren't positive at first, and you all persevered.
Permalink Reply by BaldGirlsDoLunch.org on December 1, 2009 at 12:00am
Hi LIsa,

I know this is not going to be the answer you are expecting........

Keeping alopecia areata a secret and not letting friends and roommates know that her hair doesn't grow normally is problematic. Not the growth problem, the secret. Trying to be secretive about this rather than being informative and as nonchalant as possible is going to create social rifts at the very time that making social connections is the most important thing a college student can do, especially when new. It's not easy; but the misery that hiding alopecia brings has long term negative effects. She probably had to do some explaining over the years if it was patchy loss....so I would urge the same openness again.

There are so many college students on the site here...I hope many will offer their suggestions.

As a mom our instincts are to jump in and try to fix everything. Be there, but also be on stand-by so she can show you how much of your help and what kind she wants.

This is a rough spot to be in. Hang tight. It will get better as the solutions emerge.

Thea
baldgirlsdolunch.org
Permalink Reply by Lisa F on December 1, 2009 at 10:02am
Thank you for the advice! Believe me, I do realize that the secrecy is a big issue. I want my daughter to become a proud woman with alopecia, but not have that define who she is. She is just taking baby steps in accepting this condition though so I guess I'm anticipating her problems & reactions.

Our treatment history is as follows: visit to a local derm who said that cortisone shots were the standard treatment and after 1 time of a bleeding head, we never did that again. We went to a specialist at U of Penn, great guy who gave her some some kind of irritant to wipe on her spots, and then 1 round of homeopathic visits. I never appeared desperate for a treatment, but I did want to feel that I did what I could to treat the alopecia. We haven't done anything in 10 years probably.

I can't even get her to come on this site although I've told her that it is very, very helpful in dealing with this problem. She is the opposite of social, and always has been although how much of this is a result of her alopecia (& also her diabetes) I guess I'll never know.

I suspected that the bonding was a bad idea. We will try to get a wig appointment this week. Thanks again.
Permalink Reply by Dominique Cleopatra on March 9, 2010 at 8:09am
I am waiting for my bonded hair integration system to be ready. It will be made from a mold of my head. It will stay on and look and feel virtually like my own hair, and needs to be serviced about every 5 weeks. I spoke to some of the women who have been wearing them for years and they couldn't say enough good things about having hair all the time again. I'll post on my blog my own experiences with the system, when it is ready in about 6 weeks. You may want to check out some local places that do bonding before you and your daughter decide on getting a wig.
Permalink Reply by Lisa F on December 14, 2009 at 4:18pm
Thanks for everyone's help. Right around the time of this post I took Kait to lunch & told her that maybe I had been too pushy and while I wanted to help her any way I could, I would just wait until she felt ready for a wig before doing anything else. She said that she did think she was ready. She told me about trying to put on false eyelashes and getting glue in her eye, and she asked me questions about wigs that I tried to answer. It was a really nice chat. I told Kait to look for a hair style she'd like and send me a picture. It took her about a week to get that to me, but it is her timetable so I acted like it was OK with me (that is, I really wanted to nag her about this, but I didn't.)

With pictures of Kait and pictures of a hairstyle she wants in hand, I contacted Erica at Iwigs in Brooklyn and she sent me 2 wigs so that we could look at the hair quality and color. I am really impressed with the cap and the hair. I think it looks great. Kait isn't quite as enthusiastic, but I think she will be much happier when the wig is styled and fit properly.

Now for a question or two. What the heck is the little square of netting that sticks out from the front of these wigs? We just folded it over, but I'm not sure why it is there. Also, not sure what to do with Kait's existing hair which frames her face. Should we, as she asked, get one of those stocking cap things that Hannah Montana wears? We have opted to go with the processed human hair as this is a first wig and i want her to try it out before springing for really expensive virgin hair. Does anyone have experience with either putting a soft perm in these and/or highlighting? Thanks so much for all your information and support.
Permalink Reply by Andrea on December 14, 2009 at 5:48pm
Generally speaking, human hair wigs can be styled and colored like real hair, but this hair is already color-treated so how much processing you want to do add to it can affect it. It can become brittle and break when over processed. I'd probably stick with just highlights and a really good cut. You should be able to find a stylist in Philly with experience cutting wigs. It's not the same as cutting natural hair. I just had my first experience with getting a wig cut a week ago. It feels different! I let my natural hair that I have stick out because it's almost a perfect match for one of my wigs. However, a cap helps keep them from slipping.

I am new to hairloss (like 3 months or so) and have lost about 80% of my hair in that time. I hope Kait learns to embrace her uniqueness. I decided if wigs were part of my life (for now or forever) I would have fun with it and got a shoulder length auburn one as well as my natural color (blonde). I'm not fooling anyone...it's a wig. For now or for life it's who I am. I tell everyone about it (well not the clerk at the drive thru but you get my drift). I figure the more people get exposed the more accepting they will be...and it might be easier for future people they might encounter.
Permalink Reply by BaldGirlsDoLunch.org on December 14, 2009 at 8:07pm
Hi Lisa,

The thin and sheer netting is a base to which "baby hairs' can be knotted in so it resembles a natural hair line if the hair is off the face. To look best the netting is glued down to the skin, but depending on the wearer, it does not always need to be glued down if it just 1/8"or so. If Kait doesn;t need or want the baby hairs it can be cut back to just at the first evidence of hair knots. The first "row" of hairs is not a straight row on purpose to resemble a natural hair line. So cutting the netting would not be in a straight line. A pair of tiny embroidery scissors with a narrow sharp tip works best to do this..or send it back to the wig maker to do it for you.

Yes, any kind of wig net will keep the bio hair tucked in place. That's quite comfortable. The stores that sell extensions and weave supplies usually have a variety of those. Try a few different ones because the tightness of the elastic edge will vary from one brand to another. They are only a few dollars at most. If you don't find them easily, I can send you some.

I agree, a processed hair wig is more economical and still a very good value and a good way to get used to wearing wigs.

I only highlight my virgin hair wigs which are right off someone's head without processing. But I'm more likely to pick out the 3 or 4 colors of hair I want in my wig and have it made from those colors or highlight on a wig I'm not creating from scratch. You just don't know what processes have been done to a processed wig so I don't think I would mess with it. But if you have photos of what Kait would like for highlights, you can have the wigmaker knot extra hair into it in just the places she wants. The people who do that are called ventilators. There are many workrooms in Brooklyn with ventilators doing that sort of thing. To me that's one of the advantage of using a wigmaker that has a work room and seamstresses to size wigs. Many New York wig makers do that, I don't know about other cities. I think Toronto would have them also. Philly I'm so familiar with.


Thea
baldgirlsdolunch.org
Permalink Reply by Deanna on December 15, 2009 at 11:06am
I have just spoke with Joseph Paris in New York. He actually sent me sample piece (via fedex) and I must say they fit like a glove and are the most natural looking piece I have ever had on (believe me I have tried almost everything). I would suggest them I am waiting for mine to arrive in my color. It is always hard to be seen without hair, however I have taught a lot of people by being seen that way and they seem to always come out of our conversation with a positive look on life. It can teach people lessons. If you have a positive outlook, then people perceive that.
Permalink Reply by Rose Marie' on December 15, 2009 at 3:22pm
Hi

I understand what you may be feeling like. My daughter is also 19 and has had alopecia for the last 7 years. I have always found this condition challenging at ever age and time of her life. Like your daughter my daughter's hair has grown and shed on a continual basis through the years. We have tried a different route than you and your daughter because my daughter's hairloss often became extreme and then fully grew back. Our choice was to shave her head and wear a hairpiece that worked well for her lifestyle.

Even though this decision was difficult it did become a very positive force in her life. She felt like she was in control to a certain extent and could now present herself how she wanted to, when she wanted to. Obviously this choice did not take away the fact that she has alopecia and that needs to be dealt with on a daily basis, but it did empower her and give her choices where she was proactive and happy.

Hairpieces are a very personal thing and many people decide on what they wear for a myriad of reasons. My view is if it works for you that's ok. Of course I have a personal view as well. I really like the hairpiece Libby (my daughter) wears because it really has made life a lot easier for her. She doesn't hide her alopecia but then again she doesn't really advertise it either. She prefers to be known as Libby, rather than Libby who has alopecia. Her hairpiece has given her the opportunity to present herself with beautiful hair, that is secure. It has given her the ability to tell people about her alopecia when she feels comfortable, rather than from others curiosity etc. (which can often be intrusive into people's lifes).

If you would like to understand about the hairpiece she has decided to wear just pop into my page. It may be helpful. If not I wish you the best of luck finding something that works for your daughter and her lifestyle.

take care

Rosy
Permalink Reply by Alisha Jennings on December 17, 2009 at 9:41pm
I know EXACTLY how your daughter is feeling I am in the exact same situation right now!! I have had this on and off for pretty much my entire life and always been able to cover it. Even in the last 2 years ive been going through it Ive had barely any hair underneath but I just straightened it every day and let it fall flat and it covered, I just had my hands trained exactly how to situate it without even looking. I kept this up until the end of this summer so like 3-4 months ago, than i noticed it thinning on top and heard of hair peices that you just clip to the top and your hair is under, and I thought how perfect! I went to try them out and thought I would try the full wigs on just to see what I thought, and I hated them ALL, they were not my colour (a red you cant get in the bottle) they were not my plain long style, and I still had hair underneath and it just didnt seem to feel nor look right to me at all!! So I told the lady Ill keep in touch but as of right now Im not ready to accept it yet and I can still cover it (by making my hairline on top a little to the side in one part) then slowly it got worse and I went 4 times to look for hats I like since I am not a hat person either, but finally I found some really cute ones and made them blend into my style! This has been working and still is as best as it can, but I have lost more hair and its falling out like crazy, and have noticed my eyebrows thinning, and now I thought what the hell let me keep my eyebrows Ill get a wig! ... so what Im saying in my opinion you dont accept the stage your in until your in the next one and wish all you had to deal with was the last one!!

And as far as college goes and the "secret" I can completely understand that as well, only my close close friends and fmaily know about my hairloss, even though others probably wonder why my hair is so thin from the bottom of my hat (as im missing more than half now and usually have thick curly hair) I do still keep it a secret though, its not like you can just tell every random person you meet, and I think she will keep it a secret from her roomates for the first little while until she develops a friendship with them and feels like she can confide and no matter what she thinks she will eventually feel comfortable enough to tell them. I hope maybe your daughter reads this and maybe she could come on your account and send me a message if shed like to talk to someone who is in the same position!
Permalink Reply by Kristen on December 31, 2009 at 1:00am
Hi.
I can definitely relate to your daughters situation. I'm 18 and used to always get compliments on my extremely thick hair and last may (2009) i suddenly began losing my hair. I was able to get through prom and graduation no problem because no one could notice the small patches i was able to cover up, but as the summer progressed it got worse and worse each time i took a shower. My 3 best friends were the only ones who knew and they just told me it was fine because since my hair was so thick they couldn't notice. Over the course of the summer i went to about 6 different doctors getting to get opinions for treatment and the cause. I kept thinking positive that all my hair wouldn't fall out, but it did. Over the summer i wore hats and bandanas, but my biggest fear was going away to college at the end of August and meeting new people because my confidence was very low. I knew I couldn't stay home after working so hard to go to get into my dream college. I was afraid I would have no friends and everyone would find out and judge me, but one of my close friends from high school was going to the same college as me and she helped me over come this ridiculous mind frame I had at the time. It turned out I was assigned a dorm building that was all singles which worked to my advantage so well. No one had to know although I was still ridiculously nervous.

The whole wig thing kind of freaked me out, but I have always been very self conscious and fashionable so a wig seemed like a good option. I wore a half wig headband type thing over the summer when I went to a party or something, but I didnt wear my full wig until I went to school because it was a little darker than my natural shade and I didnt want anyone to notice. I wore a hairnet underneath it because i still had a little bit of hair left and it prevented the wig from slipping, which I probably should have just shaved but that was too much for me to handle because I kept thinking this whole thing would stop. Having alopecia has taught me to NEVER take ANYTHING for granted.

I have come so far since the beginning of my first semester of college. The first week of school I told two girls I thought I could trust about my auto immune disease..alopecia because I thought they were suspicious. They were very understanding although one of them said "omg i thought you had cancer." For reasons not involving my hair I am not friends with these girls anymore, but telling someone was like a HUGE weight lifted off my shoulders. I take my wig off at night and I wore a hooded robe to walk down the hall to the showers in the beginning but then i figured out a better system for myself. Sometimes it is very hard living with alopecia, but I think I am doing the best I can. Im just like any other college student. I go to the gym with my wig on ( and a headband to secure it), go to class and go out and party just like anyone else. I only recently told one of my close friends I met at college. She was very compassionate and understanding. It was such a big deal for me that I was shaking. I still havent told my 2 other best friends at college who are more materialistic...I just dont know when the right time will be because I like being treated the same as everyone and I dont want to be looked at differently. I will tell them by the end of the next semester though because I will be in a single suite next year and I feel like I would be closer to them if they knew what I deal with everyday of my current life. I go home once a month for treatments and progress is very slow, I have finally accepted everything and I know it will get better in time.
My wig looks very realistic I get compliments on my hair and people I wasnt as close with in high school ask me if I dyed my hair and I just say yes to prevent all the explaining. My advice to your daughter is dont be afraid of wearing a wig because you can get a really nice one (mine is authentic hair from riviera) and going away to college is the best thing for you because your mind is off of it. It is very overwhelming, but you with both find strengths you never knew you had before. This is the first time i have ever came out and talked about my alopecia to anyone besides my closest friends and family, so I hope it gives you a peace of mind. good luck
Permalink Reply by Lisa F on January 2, 2010 at 11:31am
Thanks everyone for the replies, and especially thanks to Alisha and Kristen for being so open and sharing their recent experiences. I have e-mailed your responses to my daughter.

So, only a week to go before we take Kait to school in Boston! We still have so much to do. Kait got a beautiful wig from iwig in Brooklyn (thanks, Thea!) and she has been wearing it every day since it arrived. I'd post a photo but I think that oversteps my boundaries. It is long and almost exactly the same color as her hair (an ashy blonde.) In fact, we got 2 wigs almost exactly the same, in a package deal that came about because of an error in shipping the first wig. The 2nd one is now back at iwig being highlighted and having the cap adjusted. Doing everything through the mail is not the best situation for someone who has never worn a wig before though. For instance, Kait was going to a concert and wanted to feel really secure in the wig so she went to a local shop and bought wig tape. However, she says that she can't get it to stick to her head at all. It is the pink tape that is sort of semi-circular. Any ideas there? Also, my husband's hairdresser told him that the cap should cover the top of the ears a little bit. That sounds crazy to me, but is she right?

Kristen, you mentioned that you wore a hooded robe at first, but now have a different method. Will you share what that is? As it turns out, Kait has been assigned a room with a bath that she will share with just 1 other person so she will have more privacy than the normal big dorm situation.

It does give me some peace of mind to hear how other young people are handling this. I wish you all well in the new year, and hope that we can all agree that hair is nice, but not all that, as they say. Here's to living your life to the fullest no matter what is on top of your head!

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