hey christina, i don't really have any websites that i can suggest besides this one. i miss my hair ALOT but have accepted that it is gone. it took me a very long time to get to this point! there is actually a houston group that has recently started up. i haven't gone to meet with the group yet, but from what i understand it seems like it will be a group that meets for dinner every once in a while and just talk....nothing to heavy but it would be nice to meet other woman who truly understand how you/i feel. would you be interested in learning about the group? you hang in there! i am sure with 2 kids it is really hard ot have your own time to heal. i understand EXACTLY how you feel. hang in there! so when did you loose it the first time? how long did it take to come back? do you have any idea what triggered it both times?

Hi Christina,thank you for your post. I am sorry to hear that you are going through this again and that it is devastating to you. This is a wonderful supportive group and you will find some great comfort and understanding her. How old were you when you first had Alopecia and did you do anything to make it grow back? True, this disease is not easy to accept and I have had a much harder time with it then Samantha or my husband. But, he is a guy and would just shave his head. Anway, we do not have a history or Alopeica in my family, but rather other autoimmune diseases. Samantha had he first spot at age 5 and 6 months later almost all her hair was gone and she got a wig. She loves her wig, but would like to have her own hair. Sam has never cried over her hair loss and accpets it. We accept her as she is. I do have days that I miss her beautiful long hair. She is now growing it back slowly with treatment. Still she has no lashes or brows. Sam does not have any of the common symptoms associated with Alopeica. I can't say that your children won't get it, because there is no way of telling. But, I don't want to lie to you and say they won't. I do know of a few people who have it and have a child with it. But, please don't spend time stressing over whether or not your children will have AA. It is not worth dwelling about. Enoy them. I am starting a children's support group in my area and my daughter has pen pals with AA and we even had a Boston lunch with adults and children living with AA. I think Jennifer gave you some good advice about joining a support group in your area. It may really help you cope with your Alopeica. Just remember, people will see the person you want to see with or without hair. Don't let a lack of hair stop you from being you. Cindy

Hi again,

I will make sure to pass your name along to the houston support group. I think they are about to meet at the end of this month for dinner so maybe you will be able to join them? Anyway, I want you to know that all your anxieties and worries about how this will affect your life are very normal. I worried about the same stuff as you mentioned (my relationship with my husband, children, how it will affect my life, my job etc.). I can only tell you that my husband and I are closer and have a deeper love for eachother. I was very ashamed of what I looked like when I lost my hair and didn't even want him to see me as ugly as I felt and thought it was. He would always reassure me that he thought I was beautiful no matter if i had hair or not. And my worries about all of the others stuff went away over time once I realized that other people treated me with concern, gave me hope, and were always very kind and respectful to me. But it took me a very long time to feel ok with my hairloss so don't feel badly if you feel miserable now.



As far as seeing a Dr., if I were you I would go to see a dr. as soon as possible. I waited WAY to long and I sometimes think and wonder if I would have gone in the earlier stages, I may had stopped the disease from reaching the most extreme (which is Universalis - not any hair anywhere). Maybe you could use that same type of cream you used years ago and your hair will come back? you don't know unless you try?

Hi Christina, you're welcome and you will be fine!!! I hope you go the group that Jennifer is referring to. It may help you to know your not alone..write any time..Cindy

Hi Christina. I really don't have a lot of info about passing AA on our children. From what I can gather there is a very 'slim' chance of it. As far as I am awear there is no one in my family that has ever had it, but there is a history of other autoimmune issues. I personally feel our children are more likely to get excma or asma (sorry about spelling) than AA. Keep smiling and show your children how to be positive supportive individuals regardless of what life may have in store for them. I think our children have so much to gain from having a Mum with AA - our attitude to it all could really shape their feelings and actions towards others who may differ from the stereotype 'norm' society wants to mould us into.

THANK YOU FOR YOUR THOUGHTS. WHEN WE WENT TO THE RESEARCH INTERVIEW THEY SAID THAT IT MAY BE A RECESSIVE GENE THAT BOTH PARENTS NEED TO BE CARRIERS. BUT RARELY DOES IT FOLLOW FROM YOU. THEY SAID THAT IT IS RARE FOR PARENTS AND CHILDREN TO HAVE IT. SO I WOULDNT WORRY ABOUT IT. KEEP STRONG AND I WILL KEEP STRONG WITH MY SON TOO.

Thanks for sharing. I've been through a wide range of emotions since losing my hair 2 years ago. The hardest part seems to be not being able to answer when people ask, "Will it grow back?" Stay strong and stay active on this site. There are so many wonderful people here that motivate me. Have a wonderful weekend.

:) I was diagnosed with AA at 11. Usually about 1-3 bald patches the size of a large coin would appear every year. It was never a big deal because I had a lot of hair. I would also sometimes loose my eyelashes or eyebrows. The hair would always grow back within a year. By the time I went to college the occurrence of AA slowed down.
At 24, I started with 1 patch, then 3, then the patches started merging and forming huge bald patches. I lost all my hair over a 3 month process. After 6 months, I realized I had AU. No hair anywhere. It's been 2 years since the initial loss. I don't take treatments for the condition. Twice the hair on my scalp has started to grow back only to fall out again. It's a struggle, but I'm so blessed. God is working wonderful things in me and those around me. I try not to question; just embrace the moment. If the hair grows back--FANTASTIC. If it doesn't grow back, then I've saved tons of time and money on "beauty" sessions...lol.
Let me know if you have any questions or just want to chat.

Hello and welcome, Christina !
I know how hard it can be. I have had alopecia for about 30 years. After I became the spokesperson for the National Alopecia Areata Foundation, a lot of women were needing my help and support, so I wrote a book called, "If Your Hair Falls Out, Keep Dancing!" It might make you feel better. You can find out more on my page -- and let me know if there's anything else I can do!
LeslieAnn

Hi Christina!
Thanks for messaging me! I'm really glad you did :) It's always interesting to hear about other people's cases of alopecia. They're all so different! So unpredictable! I completely understand that you find it hard to deal with. I'm definitely finding it easier to deal with now, but my first couple of times were absolutely horrible. I turned into someone I didn't recognize and I was so depressed. I had a hard time looking in the mirror and I hated the way I looked. It's funny, because looking back I can't believe that I was so concerned about it! It was hardly noticeable. But lets be honest, we're young women and hair is definitely a concern at our age. I'm so sorry that you are having those feelings. I know how terrible it is to feel like that. I can remember having millions of questions about it and just wanting to hear something promising... like that it would stop falling out soon, or that it would grow back really fast. But the truth is, everyones case is SO different that there's absolutely nothing you can predict or know for sure. I was always so scared that all of my hair would fall out and I definitely still have that fear.
But since you asked about my story, I'll give you all the dirty details (and you can ask me any questions... no such thing as too personal...i'm pretty open). So far I've had four boughts of alopecia. My very first one was at 14 and since I'd never heard of alopecia I was hardly fazed by it. I had SO much hair to begin with that I didn't care at all. My mom noticed it before I did and she was FAR more concerned by it than I was! I lost it at my hairline and behind my ears, but it grew back quickly without any help. The second time it came around, I was 15 and I was devastated! I knew exactly what it was and I was SO angry. I lost it around the same places and a couple of patches here and there. I lost a crown around my head. It was pretty well only noticeable to me, but I felt like I looked like an alien. So, I got a couple of cortisone injections and a hair piece and I wore a lot of hats. It all grew back. Third time was in my graduating year and it was SO hard for me. Lost it around the same areas, wore my hair piece, got cortisone injections and it eventually grew back. But it fell out for about three months straight and i lost quite a bit of hair. The fourth time i got it was exactly a year ago and the same thing happened. It fell out for about 3 months and I got quite a few rounds of cortisone injections, and then it all grew back! So, sometimes i worry that it might all come back in a couple of months because my pattern seems to be that i've been getting it pretty much once a year!
So, I don't know if ANY of this is of help. I pretty well just wrote you an ESSAY and I apologize. I've never been good at shortening my stories. BUT, no matter what happens I promise that you'll find a way to deal with it and it can only make you a stronger better person. As hard as it has been for me, I wouldn't take back having alopecia for anything! It has taught me so much! I went to the Alopecia Conference in kentucky last year and that was really really good for me too. I would be more than happy to answer any more questions that you might have or talk about whatever you want. Just make sure that you teach yourself to love yourself no matter how you look. And I bet you look beautiful anyways. Look in the mirror and tell yourself that you love yourself and face the day with a positive attitude. Try as much as you can to NOT think about it because it makes it wayyyy harder to get through the day. Your hair will grow back and you'll have a new found appreciation for the important things in your life and you'll be more compassionate to other people.
Christina..you can do it! Just keep your head up.
Sorry for this mASSIVe rant! Keep me posted and best of luck getting through the dark days.
Talk to you sooon!
xoxo
Z

Hi Christina,
I apprectiate the sharing of your story. i have just been diagnosed with alopecia this past February. i found my first spot on Jan. 28th..and was like...what the heck is that??? Well, since this time I've been through hell and back. I got into a derm immediately, about two weeks later and she diagnosed me with alopecia areata. Thought GREAT, AWESOME...this really sucks. she asked me if I was under stress and such...I hadn't thought about it until that point and as I reflected...yeah I was. At the time I was teaching Science and Bioilogy at high school full time and looking after my two kids who are 4 and 2. I had guilt in leaving my kids daily with a sitter, my mom in law was recently diagnosed with breast cancer....yeah, I'm stressed. The derm gave me a topical steroid to put around the spots to prevent them from spreading and said see you in three months. Well...since that time I have 4-5 spots. The steroid is giving me acne and thinning my skin. Luckily, all spots can be hidden and no one has noticed. i went into a good depression and am currently on meds and seeing a psychologist. As well, I'm on leave from my job. This was the bad news....Here is the good news. I'm still shedding like crazy, but I'm learning to begin to accept what is about to happen. I'm learning to cope and learning that love of people and yourself will carry you a long way. I am expecting the worse in losing my hair. My spots have appeared quickly. I can actually feel sore spots on my head and then find my hair falls out in those spots. In a month I have gotten 3 new spots. It sucks!! But things could be alot worse. I TOTALLY understand how you feel. I'm scared at times, I'm impatient but I am also gratefull for my husband, kids, and life. Hang in there. Your loved ones will not dismiss you for not having hair...that's my biggest fear. I find the more people I tell, the better I start to feel. I find that talking to a therapist has also helped and also helped validate my thoughts that yeah, hair is important but it does not define you. You are stunning. I have also come to have a great relationship with God throughout this journey. He gives me strength and courage to face the day. I know this is hard...I'm right with you. But we will come out of this stronger in the end after all the tears and fears subside. Keep in touch...we seem to have a similar journey.

Hi Christina,

Thanks for the wonderful compliment you put on my page. Acceptance and a positive outlook aren't easy things to come by, but they are priceless once you get them. It took years of battling myself as an adult (even though I grew up with AA) and actually coming across old schoolmates that have been personally touched by AA in their adult lives -- and having them seek me out and either apologize for how horribly they treated me, ask me for advice, or both -- for me to realize that my true life's calling is to educate everyone about AA and to also be a light to everyone I come across. It is my prayer that by doing that then others will develop that outlook you so admire in me, and join me in promoting alopecia education and awareness!

I hope to talk to you again soon, and hope you have a great weekend!

Your new friend, YoKasta

Hey Christina,
I'm right with you with the control, perfectionism, how are people going to view me thing...to a tee. I have always been very put together, very outgoing, organized and wanting everything in my life to be perfect!! This is what through me into a depression, with crazy thoughts and sadness. One teacher colleague of mine even said "you are the picture of perfect health and happiness" I was like "I know...I'm on meds...this is insane!!" I think we have to realize even the best of us fall...and maybe hard. There is a book that has been fabulous!!! for me to help me with some of the control of thoughts and things that are out of control. i recommend it. it's an easy read and it is about changing your perspective. It's called "Feeling Good" by Dr. David Burns. It is a book that is "Clinically proven Drug-free Treatment for Depression" It has helped me out a ton and allows you to regain control of your thoughts and perspectives. Give it a read. Hang in there. Things do get better...maybe not the hair...but your perspective will. I thought I was insane when this hit...so you are already doing better than me. Keep smiling!

Hi Christina,
Thankss for the compliment. I can't really say what will happen t you. Unfortunatly, Dr's don't even know. I have AA about 5 times before I had gotten AU. I knew this time was different because my hair came out VERY rapidly (lost all of it within a month and a half). Also, nmo treatments were working. I tried many things, and they didnt work. However, when I had AA, steroid shots and creams worked.
\Like Jenn, I went through a depression as well. It was a rough 6 months. I opted to go on meds, and it helped a lot. I am not on them anymore because I have gotten used to the situation. It just takes time to get used to.
Keep your headup and I wish you the best ; )

Lets see, it got progressively worse everytime, but they were pretty spread out. Ide say once when I was 16, once when I was 19, 21, 23, then there was a LONG break ( thought it was over) and then it hit me the worst at 27. Never wore a wig untill now and never lost lashes and brows untill now.

no problem. Honestly, the first year or so is the toughest. It was very hard on me, but now, I can honestly say, I'm o.k. I still get sad at times, but it's a c ondition that you can adjust to ( since we don't have a choice). My best advise is to take care of yourself, and make yourself happy. That's all this disease ( or condition ) does it alter your appearence. So, if you can make yourself look the way you want to look, then you've won half the battle. So if you need any tips on wigs, eyelashes, ect...ask around ; ) including me.

Hi Christina

Thanks for the message and I'm glad you found my story helpful. I still wish I didn't have alopecia and if someone told me I was going to lose all my hair before I did then I would have been horrified but it is possible to find creative ways of coping and even see good coming out of losing one's hair. It can be quite freeing in a way. You find strength you didn't know you had and become more appreciative of other stuff in life. I hope you can find a way of coping with it.

I see you are from United States Minor Outlying Islands. I've never heard of that. Where is that?

Hey, how are you doing today? Hope you are well. Give me an update. I had a good meltdown yesterday!
Jenn

Hi! Thanks for sharing your story with me, I'm sorry to hear you're losing hair again. When I lost my hair the first time, it was bald spots and it came and went just throughout the years. When I was 14, it fell out pretty quickly - I lost all of the hair on my head. I did the steroids and cortisone shots and got it all back in around age 16 I had a full head of thick dark black hair (I had always had light brown before) But when I lost it when I was 17, it all came out within a month or 2, I want to say. I haven't tried anything to get it back this last time. I lost my eyelashes, eyebrows, everything.. Just recently, about 4 or 5 months ago my eyelashes started coming back!!I am almost 22 now... So, that's very exciting to me. But, I just found out last week that I have an autoimmune defiency, possibly RA or Lupus. One of the symptoms of Lupus is alopecia, go figure. So, I'm hoping that with treatment for that, I will hopefully get my hair back!!! Keep your fingers crossed for me! =) I hope you the best! Keep in touch!

Kristin

Hi Christina. How was your weekend?

I have pretty continuous mild to severe patches of baldness since diagnosed at 15. More recently it has become slightly more severe but still managable, I have done topical steroids and cortisone shots but have found that it just makes it better for a little while but then a larger new spot then typically emerges. Everyone deals with alopecia differently, but i can only suggest to keep things in perspective for it is only hair. Arms, legs, organs etc. are much more important. Also, keep in mind that our society socially constructs beauty therefore, your beauty can only truly be defined by you. Stay strong and give your mind time to heal from the immediate psychological terror uncontrollable hair loss may leave you with. Find joy in daily activity and fulfilling things such as volunteering=) All the best,Holly

Hey, hang in there. I first lost all my hair at age 4 and after getting treatment and it all growing back, it fell out when I was 21. I know its a hard thing to go through but I'm sure you have a very loving and supportive family. At some point you just have to say, this is me and go on with your life.

Hiya Christina,

Thanks for the message! My alopecia started when I was 23 and it's been on and off since, initially my hair loss was significant and then it settled, this time last year I was well on the road to full re-growth, however since last summer 2 patches have become active again and my hair loss has accellerated, not to the same degree but I still notice it! I think it is hard to compare cases as every individual has differences in their symptoms, loss, frequency etc. Rely on the support network around you and take comfort in the thought that you are not alone, I know how hard it can be but you will get strength from hearing from other people and how they cope etc!

Kat xxx

your story sounds so much like mine...it sucks bad!

Hey girl..Thanks for the comment! I see that you are from Houston, Do you ever come to Breckenridge or Abilene, Tx? I know a few people from Houston and I went and stayed there for a couple weeks about 2 years ago! If you ever come close...you should give me a hollar! I know what you mean about controlling the AA crap! Its not possible. Have you noticed anything that your doing helping you?

Hi Christina,

My apologies for a very late response to your note to me, back in March. This is the first time I've logged in, in too long a while. You had asked me about AA being genetic, and had mentioned that you are afraid you might pass it on to your children. Honestly, Lynnea's alopecia came as a real surprise for my husband and I. As far as we knew, no one in our family had it. It seemed completely random, however, when we really thought about it, my husband did have a form of hair loss. For years he had little patches of hair loss show up in his facial hair - nothing huge, but very random in appearance and dissappearance. We used to lovingly refer to them as his 'crop circles'. A little research confirmed that it is a form of alopecia, as well. Then, lo and behold, my brother started to develop the same thing. Both sides of the family - voila. So, overall, yes, there does seem to be a genetic 'handing down' of alopecia. But it also seems to need a trigger to set the disorder in motion. So, while one of our daughters has alopecia, the other has a full head of long brown hair. They most likely both carry the genetic 'roll of the dice', to quote the dermatologist that we saw, but Lynnea's happened to be triggered through vaccination stress. You'd mentioned how happy she looks in the photographs, and though it's been hard for me to finally reach the place where I've come to terms with Nnea's alopecia, she's always been fine with it! She's secure in herself, and likes her bald head. She's actually had some significant hair regrowth recently, and isn't too pleased with it... ha ha. Go figure, hey?

Try not to worry too much about what the future may or may not hold for your child. And if you do (and I know what that's like, trust me), you can always drop me a line. Thank you for your message!

Janna