Replies to This Discussion

Permalink Reply by Vicki on February 19, 2014 at 6:39am

Hi Sheryl, I have AA and lost my hair over a period of six months and at the end of December I decided to shave off the little bits that were left. I had been wearing head coverings to hide the bald spots. When I went back to work (large office environment with lots of people), I decided to go bald. This was hard but very liberating at the same time. I can be comfortable without worrying if my head is all covered. Don't despair. You need to find the strength within yourself. I found that I was more worried about what others would think of my new appearance. People have gotten or will get used to it. I hold my head high and think about all the people in worse situations. My daughter had her eyebrows tattooed on by a professional make up artist when she lost her eyebrows. She wears light eyeliner to mimic the look of eye lashes. These are some options you might consider. Stay strong Sheryl.

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Permalink Reply by Debs on February 19, 2014 at 7:35am

Dear Sheryl, like Vicki has said in her reply to you, getting eyebrows tattooed by a professional is a viable and attractive alternative for us. I have my eyebrows tattooed. I also have my eyelashes enhanced. This is a very thin eyeliner affect. Really subtle but is creates the illusion of eyelashes. I have nostril hair but I would ask a doctor for a mild basal spray to get your nose clear of virus. Nose hair has a purpose and is the first line of defence to trap virus entering our bodies so your doctor should help you manage this. You may find using. Neti cleansing pot with a weak saline solution helps your nose feel healthy. You can but a cheap plastic one online for about £8.

I wear wigs , scarfs, bandanas and buffs. This condition is is a terrible shock but we can still look pretty. Give yourself permission to be upset and grieve for your changed appearance.

take time to experiment with different ways you can manage your appearance and find something you feel comfortable with. There is a ton of info online about wigs etc if you decide to take that route.

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Permalink Reply by Ruthie on February 19, 2014 at 10:39am

HI Sheryl,

 

I am not sure that i can be much help, as I am in the same place as you are.  Some days I get up and say it's ok this is just the way it is and I am o.k  and the next day, I am down again. I think that is part of the grieving process.    I have lost all the hair, but the hair on my arms (like i really need that) I never realised how much the nostril hair and eyebrows and eyelashes really did until they weren't there anymore.  I have started wearing hair and that is going ok, have been wearing synthetics, but just transitioning to hh, I am going to have eyeliner tatoos in March, but scared about the eyebrows, I want to see what kind of job she does with the eyeliner first. I have just learned how to put eyelashes on, but only wearing them on weekends, they still take me a while to put on, and i allways get one perfect and the other not.    I think one of the things that is really affecting me more than anything is that you just learn to cope with one thing and then another comes along.  get used to the hair on you're head leaving and then have to figure out how to cope with the next thing.  All in all, I will say things get easier, and definately reading posts on the website and the people are all so great on here, helping with any question that you have.  I think that helps me with not feeling so alone, we are all in this together and one day we will be answering the questions of how we dealt with these things to other people that are just starting to go through it.  There are definately some very beautiful and brave people on this website.

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Permalink Reply by Jason on February 19, 2014 at 12:13pm

Hi Ruthie,

How did the SADBE work for you? how long did yo use it? Any progress or results? Would love to hear what happened... please let me know if you have a chance. Thanks.

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Permalink Reply by Ruthie on February 19, 2014 at 4:42pm

Hi Jason,

It didn't work very well.  The first time did nothing, so I went back for the second trial, and the whole side of my head swelled up and burned, he had only put it on a tiny spot on my head,  plus lymph nodes were all swollen.  I decided to try one more and he used a smaller dosage, but the same happened.  I was very afraid of scarring at this point as not only was it swollen, but blistered, I couldn't even touch my head.    I didn't consider it to be slight irritation.  I am sure it works for some, and I was willing to give it a try, and still glad that I did.   I was not one of the lucky ones though.  Since then I have shaved the rest, and have now lost eyelashes and eyebrows, and trying to deal with it the best i can.  The doctor has suggested Cyclosporine, and latisse, but they all come with risks, so for right now I am taking a break.  How did it go for you?

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Permalink Reply by MtnGirl on February 19, 2014 at 11:21am

Shery,

I have had this condition since I was seven years old.  However, it has progressed to loss of 75% of my hair on my head.  I have been lucky that when I start to lose my eyebrows, I was able to use an eyeliner to lightly fill them in and they have always come back.  I have to be patient.  It is very distressing.  The only positive is that I have very few hairs on my legs and arms.  I do not have to shave my legs as often as most women (yeah)! However, I do not have nose hair.  I have never really thought about it.  Please know that you are not alone.  There are so many people that suffer with this and finding this website has been helpful for me.  I do like the fact that I can change my look with wigs or my weaves.  I can have any color hair or texture (straight, curly, wavy, etc) that I want.  That is kinda cool.  Everyone has to find what works for them.  I am always researching and finding new things. I would check the forums and do your research. There are solutions out there and new ones all the time.  I have also tried the medical solutions of creams, shots, lasers, UV lights, topical solutions, medicines and sometimes they have worked and sometimes they have not.  I have had it along time and those treatments worked early on (into my 30's).  But in the last 10 years, I have found that the continuous loss of hair has caused my scalp to be scarred.  After there is scarring, there is not chance of hair regrowing.  It was not something I knew prior to it happening or that it could happen. It was very upsetting to me that my hair was never going to return, like in the past. But I have learned to move on and accept the options that I have available to me.  I often get compliments on my hair and I smile and say "Thank you".  It is nice to know that it looks nice and they do not know that it isn't mine.  Good luck and you are in my prayers. 

P.S.  I have never thought about having my eyebrows tattooed on, but it sounds like something that I am going to research.  With the loss of my hair, I do not know if my eyebrows will be here like always. There are so many people on here that can give you ideas of what has worked for them and what has not.  This can be a wonderful resource for you.  I wish you all the best!

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Permalink Reply by Sheryl on February 19, 2014 at 12:39pm

What a wonderful experience to wake up today and find I have all you lovely people sharing loving thoughts and feelings to me, thank you all! Losing all these things isn't exactly new to me, I had cancer 5 years ago and through chemotherapy lost everything but this is a very different thing since no-one can say whether they will grow back, I think that is perhaps the bitter sweet blow of all. I will see about getting some nasal spray Debs since I remember what happens with no nostril hair, it can be hideous. I have some wigs choices coming in a few weeks and although I'm not excited yet maybe I'll get more so once I play around with them. Looking too far ahead is tying me up in unnecessary knots so I'll try to pull back and stay gentle with myself....once again you guys a big thank you :)

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Permalink Reply by I am just me on February 23, 2014 at 5:57pm

Sheryl,

I am new to this site also. I have scarring alopecia. It has affected my eyebrows also.  I told someone earlier today that I am more upset about my eyebrow loss then my hair.

I can't say I understand what you are going through but I can relate.  I know what the good days and bad days fell like for me. What has  helped me feel empowered is Realizing that I had to develop my own coping strategy. I spent a lot of time reflecting on my goals & priorities and redefining what I  personally believed beauty was.  I refused to let my lack of hair keep me from doing things. I started to talk more about it so no one felt like they had to tip toe around me.  

I am not sure if this is helpful or not.  Stay strong.

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Permalink Reply by BlitaG on February 24, 2014 at 1:15am

Hey Sheryl. I feel your pain. I have no eyebrows and this depresses me totally every morning as i have to go to work and i draw with an eye pencil for now though ve gotten so good people always ask me how i do it. But have seen some people even with hair with their brows tattooed and they look great. I'm rethinking it and seriously looking for a professional. May be you can consider this too.

Just allow yourself to grieve as it is the only way you will accept. It also gives you time to rethink how to focus the negativity to something that makes you happy. In all honesty i can say it takes time, its not easy but you will get there my dear and you will learn to appreciate things that other people take for granted..

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Permalink Reply by Maudy NL on February 25, 2014 at 12:48pm

Dear Sheryl,

You've come to the right site! There are -as you might have noticed- a few thousenend fellow baldies in the world, all trying to cope with a personal dissaster.
Depending on ones' environment (family support, lovelife, work, etc) it makes it easier or harder to cope with.
Shame is the two faced monster we all have to deal with. It notifies us in a most pressing way that we're different from 'the rest', but in another light it can also make us more compassionate for our neighbour (who's dealing with his/her own deamons). For we know how it feels to be different or depressed.

I'm not going to tell you how my worst nightmare came to me, there are enough tear jerking stories as it is. But I'll tell you this:
It is not so bad as it seems. Having no hair makes you stand out in a crowd, make the most of it! Wear exquisit hats, breathtaking turbans or let them all see how BALD you are!
Put on some fab spectacles that express your personality and cover the lack of eyebrows.
Try to force people to respect you by just being yourself. I have found it is a very powerfull way to make people respect you and take you as you are.
Do'nt hide: they (the ignorant tabbies) are not worth it. They comment to cover their own imperfections.

The sun also rises for you, and you may not be just like te rest of 'them', but perhaps because you're different, you're more worth to be seen/known!

I know it sometimes doesn't feel that way, but in the end IT's JUST HAIR you know. Don't let it get you down and don't loose you head! ;-)
Good luck

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Permalink Reply by Lilac on February 25, 2014 at 10:16pm

Hi Sheryl, I was reading your post and although I have androgenetic alopecia, I can 100% commiserate with you. What you are doing is grieving. We all grieve for something that we may not gain back in our lives, and that is okay. Sometimes at some point, we will have to lose something and also move on. If we cannot move on and accept status quo, then we will go insane. I am not being silly. You will not be able to function in your daily activities because you are dwelling so much on your hair loss, which is understandable. You have to give it time. I'm only 19 but I started losing hair when I was 15 so I know how it feels to be completely devastated when you lose something that's so precious to you. You need to give it time for yourself to come to terms with your alopecia. It will not happen overnight, hence your feelings at this moment. You have our support and we will be here for you when you need to vent or rant. 

Over time, once you learn to accept your alopecia, you will realize that it's only hair. But even if you know that it's just hair, the pain will not be eradicated, just dull compared to how we felt when we initially faced alopecia. 

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Permalink Reply by Sheryl on February 26, 2014 at 12:34am

Hi Lilac, I thank you for your reply, you're very wise...and yes I realise now that I am grieving for things lost. It would seem the prognosis is going to be moved up to Alopecia Universalis, since I now have major hair loss everywhere else taking place. Sometimes I am feeling so angry at what doesn't seem to be fair, then the next minute I'm plummeting into sadness! I know I have to work through this and am pleased to have joined this site which has given me some great feedback and support so far. Lovely to hear from you :)

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