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Permalink Reply by Tallgirl on December 19, 2011 at 5:52pm

Well, my son, at 11, actually went with me to my health insurance office to try to lobby for payment for a wig. It didn't work, but I was so proud of him. Teach your children to be informed, communicative, strong people in life by example with yourself. Mothering is not just about wimpering in a corner...you are teaching every minute of your day, whether you know it or not. Maybe you are also "chosen" to show where strength can be found in times of confusion so your kids will know where to turn: church or otherwise. God gave you those kids for a reason, so get a griup and be a mom, for all the RIGHT reasons (not just looks).

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Permalink Reply by Tom S. on December 20, 2011 at 10:43am

Me being a very religious and spiritual person for a short time I went through the same thing. I questioned why God would put this on me, etc. etc. But since then It has only strengthened my faith. It actually has made me a more tolerant, spiritual and loving person. As cliche as it sounds you have to realize that it is only hair; it's just another materialistic thing that we often get to attached to in life. Appreciate what was given to you in life and realize that there is a reason for everything.

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Permalink Reply by Betsy on December 20, 2011 at 10:54am

Thanks for the kind reply. I can see my feeling that way a ways down the road here. I was listening to the priest say the other day that we all need to use our talents for the greater good of our faith community. Right now, this loss has caused such deep sadness in my life that this is hard for me to find the energy or confidence to use my talents. This is what I do not understand. It has definitely interrupted my ability to do the work that God intends me to do. I look forward to feeling like you do, I'm just not there yet. I know it is only hair, but it is really so much more.

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Permalink Reply by Tom S. on December 20, 2011 at 11:19am

You right, it does feel like so much more. People will always try to belittle our condition in attempt to make us feel better: "at least it's not (insert a life threatening disease)". But what does come with this condition that people don't realize is all inner emotional turmoil; especially for women. But as another cliche goes: "time heals all wounds." So you may feel really angry or depressed now but realize that things will get better.

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Permalink Reply by Tallgirl on December 20, 2011 at 11:56am

Time also wounds all heels. Rude people will get their come-uppance some day. In the meantime, keep on being you with all the joys, strengths and talents you already have.

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Permalink Reply by Alina07 on January 12, 2012 at 4:41pm

I agree with you. Alopecia actually brought me closer to god. If you would have asked me 8 months ago I would have said "I don't believe in god" but now I'm a different person. I'm more patient, understanding, loving and I appreciate people more. Here's a quote I really like "If someone prays for patience, you think God gives them patience? Or does he give them the opportunity to be patient? If he prayed for courage, does God give him courage, or does he give him opportunities to be courageous? If someone prayed for the family to be closer, do you think God zaps them with warm fuzzy feelings, or does he give them opportunities to love each other?" Betsy I hope you find peace :)

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Permalink Reply by Ha1rloss on December 20, 2011 at 6:47pm

Hey there. There's a couple of things I want to say in response to your post.

I've had alopecia since I was 13 (I'm 26 now) and all I can say is that it's so incredibly unpredictable. My first bouts were so minor that we thought it was some sort of mishap with scissors lol. As smaller patches gradually started to occur, we went to the doctor and turned out it was alopecia. Since then it's only gotten progressively worse to a point where I'm on the brink of universalis, but there were definitely times when the hair would just regrow on its own. So there's always a chance that it'll grow back at some point but we may never know.

I also wanted to ask if you've seen a dermatologist about it? Localized steroid injections are known to work in a lot of cases and even systemic (oral) steroid doses for the more persistent bouts. Just to set expectations, in most cases there seems to be resurgence a few months after treatment is stopped but for some people that does the trick.

Finally, I am not very religious but I guess I think of things as life having dealt you a deck of cards and you trying to make the most with what you have. I mean think about it, a lot of people have alopeica as a result of chemotheraphy and think of how stressful it must be to find out that you have cancer, AND you're losing your hair. I'm not saying this to trivialize the immense psychological stress that people (self included) face at the onset of alopecia, but just trying to put things in perspective - at the end of the day, the effects of the disease are cosmetic at best. It's just a pity that as a society we focus so much more on appearances than other qualities.

Wigs/Hair systems are quite advanced at this age so there are certainly options that you can consider. I have resorted to just shaving my head (it's much easier to do that as a guy I guess) but I've let my close friends/family in on the alopecia and I think those that really care for you will give you nothing but support.

Keep us posted!

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Permalink Reply by Betsy on December 20, 2011 at 9:01pm

Thanks for your concern. I have seen three dermatologists. The first time I noted hairloss was about a year and a half ago when I was really watching what I was eating and increasing my exercise to lose some body fat (I have never been close to anorexic...always in a healthy body weight range...just trying to shed a few pounds.) Anyway at the beginning of summer 2010 I was doing this and noted my first "spot" the size of a quarter on the back of my head. It was treated with injections and got better. I had no further problems that year until begining of summer 2011 when again I was trying to shed some winter pounds. This time I experienced much more shedding, alopecia totalis. I was treated with prednisone which I can only describe as making me feel "toxic". I was on prednisone for about 3 months and by October had nearly a full head of hair back...yay! I ran a marathon in October and shortly after experienced rapid loss. Obviously, physical stress is a trigger for me and I am kicking myself for running that marathon.

It is now progressing toward universalis. I have decided not to go on predisone because it made me feel so ill. I have received some injections to my eyebrows about two weeks ago, we'll see if that works. My eyelashes are now falling out too. So, each time it seems to be much much worse and I am starting to lose hope.

I have an appointment scheduled with an endocrinologist as I do have hashimoto's hypothyoridism as well (another autoimmune condition.) Hair loss can be associated with this. I have an appointment with a GI doc scheduled as well as I suspect I may have celiac disease. I also have an appointment scheduled at the Cleveland Clinic in the hair loss specialty clinic in January.

The Dr. I have found to be most helpful to me is a naturalist I began seeing early this summer. He suggested a gluten free diet and has me on a bunch of supplements. Up until October I was very hopeful that he could help me. Everyone else seemed to be giving up. I find myself wishing there was an "autoimmune specialty" in medicine. It seems that even the dermatologists, at least the ones I have seen so far don't really have a good handle on this disease.

I am open to suggestions you all have as to treatments that have worked. I'm afraid that at some point you just have to move towards acceptance and stop spending all of your time and energy (and money) on hope.

I do have a few wigs that I am somewhat happy with. My eyebrows are my biggest challenge right now.

So glad to have all of you to talk/vent to during this time of uncertainty. It seems that others just do not have the right words to say.

I went to my kids' Christmas concert tonight. It was beautiful. My kids give me much hope and reason to keep my chin up:) Who knows, maybe the way I choose to deal with this speedbump will help them deal with something even more significant in their lives in the future.

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Permalink Reply by Ha1rloss on December 20, 2011 at 10:11pm

I agree - I wish there as some cure for autoimmune diseases. I used to be on prednisone as well but they kept having to increase the dosage to keep pace with the breakouts so I just decided to end it. Apparently long term use can have a lot of unwanted side effects.

So for the eyebrows, I really hope that the injections work for you. I used to get them as well and they worked well for years until my immune system decided to get the better of me completely. Maybe try the injections along with a topical ointment?

Since losing my eyebrows, I've been using eyebrows from this website below. Unlike a lot of the other eyebrow wigs you get, these are made with human hair and actually look pretty decent.

http://www.headcovers.com/cosmetics/eyebrows/

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Permalink Reply by Disaster on December 31, 2011 at 1:52pm

After reading this the run marathon got my attention but have 1 question have you notice a temperature when you start losing hair any of the 2 times because i did the temperature was so little that hardly felt it but was getting like warm waves than normal the temp was 37 or 37.5 didn't end with months

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