Comment by MegElisabeth on January 6, 2017 at 1:59pm

Hi rachel!
Your story caught my eye... I'm 24 I found out that I had alopecia when I was in middle school. Mainly small spots, easy to "hide" and also easy to treat. It has been mainly spots small sizes ranging from quarter sizes to the softball size you are talking about as well.

It's a difficult thing because we are girls and we LOVE our hair. I have been getting treatment for over ten years. The steroid injection treatment has helped me. I recently stopped the treatment due to some other health issues. The injections don't prevent new spots from forming only help ones we have. For ten years I would find that I would have maximum 5 spots scattered around my head. More recently it would be similar spots, around my ears, top of my head, and underneath. It turned for the worse for me in June 2016.

Lost most of the hair on the top of my head, but got treated. After so I stopped treatment. All of my hair grew back on the top but today I am facing full baldness underneath, on my ear line, and underneath. I have larger spots than I have ever had.

I understand your story. It is hard to relate to someone and talk to someone who doesn't go through it too. I tried yoga and meditation where I hear it helps to relax and get your mind at ease. I suggest it!

I know it is hard, it's been ten years for me and to be honest I don't think I am "at ease" with it yet. My friends and family are my biggest support but what about those who don't know? I am self conscious about it everyday... but I tell myself that life is too happy to be sad about hair. But hey easier said than done right?!

Have you tried any treatment, new shampoo, hair growth topical?

Xo Megan

Comment by Christi Q. on January 24, 2017 at 2:08pm

Comment by Christi Q. on January 24, 2017 at 2:19pm

It truly is so difficult to accept and deal with my dear. I wake up in the middle of the night thinking it's just a nightmare....only to realize it's my reality. I have not been sick (cold, flu, etc.) since 2009. My immune system is a mighty sword....so WHY is it attacking my beautiful hair? It's mind boggling and so disappointing. We are all here for each other. Stay in touch!

Comment by AnnS on January 24, 2017 at 2:39pm

It's really really hard to deal with as a disease. I'll share my story - I had one spot when I was 22 and under a lot of work stress. Had cortisone injections, no one ever told me it was autoimmune or it could return. Twenty years later, at 42, I was under another stressful work situation (I've had lot of way worse stress, but for some reason it's work stress that does me in), and my hair started falling out. Lost most of it and wore a wig for a year. Grew back in after diet modification. I had my own hair for a year, then (more work stress!) it fell out again starting fall of 2015 and I was bald by December that year. I wore a (new, Follea, they're gorgeous) wig and am still wearing it. But over the past year my hair has grown in and with the exception of a few spots along my forehead hairline, above my ears and back of my neck, it's grown in pretty well. I'm within 1-3 months of growing it back in and being wig-free. I did everything - methotrexate, injections, topical, Rogaine, essential oils. But work stress seems to push me over the edge. So I've reduced it considerably.

As for how I feel - there are good days when I am doing very well, I love my wig (it's still hot and itchy but it looks fab) and life is good. There are days when I look like hell, I feel even worse and I wonder why me and why alopecia.

What I have come to know is I'm more than my looks (but no one would hire me to help their business if I were bald...) but society still judges us by them. So I wear my wigs, I got microbladed eyebrows and I use lash booster treatments.

 I don't think you ever get used to it. I'm in a good regrowth now and so hopeful. But in two years, it could come back - and every exit from remission is demoralizing.

What has worked pretty well (anecdotal evidence but it won't hurt you) is to drink a tumeric tea every day. It's often listed as Golden Milk on Pinterest and a lot of recipes are out there. I use 1/4 tsp Tumeric, 1/8 tsp black pepper, coconut milk and hot water. I drink it first thing, every morning. When I was taking methotrexate and had developed new patches even taking it, I drank this tea and my hair did grow back in. I can't say it's causal but there is a lot of research about tumeric and alopecia and it shows good promise.

I won't get used to alopecia. I used to have long hair and I miss it terribly. But I wouldn't have long hair now ( probably) that looked good, because I'm now 47. The wigs actually look better ;) Hair ages too. But my short hair looks cute and soon it will be enough to go without a wig altogether.

For me, hobbies, sports and friends have helped. My kids love me no matter what. My son tells everyone I wear a wig, LOL (he's a first grader). So I can't hide it if I'm around him. My husband loves me but he wishes I still had hair.

You can get through this. Post here when you need help getting through your day. We understand.

Ann

Comment by AnnS on January 24, 2017 at 2:40pm

Me, December of last year and last week:

Comment by sadele on January 24, 2017 at 2:42pm

I know how hard it is to get through the day without thinking about your hair... I think about mine every single day, and no matter how great of a day I can have, there is always this little cloud reminding me of how inconvenient it is not to have my hair. I lost mine in 2013 and it all grew back. I lost it again in 2015 and within a couple months I went AU. Devastated is an understatement of the emotions I felt. The irony of this is I'm in the Esthetic Industry, it's my job to make women feel and look beautiful. Sometimes it feels like a big kick in my stomach. I know all to well how it feels to cry a little everyday because of this... I"m not going to sugar coat it and tell you, "it's only hair", or "It could be worse"... It's not ONLY hair, it's so much more. It's our femininity and to some, our identity. I've learned one thing, and that is to be stronger than this disease. There is no other choice. I continue to pray for a miracle treatment, and I continue to believe that there will be one. In the meantime, know you are not alone. And it's ok to grieve and cry and be frustrated. You will find an inner strength that you would have otherwise may not have ever found without this condition. Be your own advocate. This site is very helpful.. You can always message me if you need to talk as well.

Comment by Stacie on January 24, 2017 at 2:50pm

Rachel, I'm really sorry for what you're going through. You're definitely among sisters (and brothers) here. We all can sympathize.

When I first recognized that my hair loss was serious and, in all likelihood, permanent, I jumped immediately into wig wearing. That worked for me on a lot of levels, but I will say that I probably didn't acknowledge the emotions that I had about my hair loss for a few years. I wish that I had done more early on to work through those emotions instead of just bottling them up and ignoring them. I honestly think that a little bit of therapy would have helped a lot, and I wish I had been kind and patient enough with myself to do that. You may want to consider whether going to a therapist - doesn't have to be long-term and it can be limited to this issue - might be something that could work for you. It could at least help you to express those feelings of anger and sadness and get tools to work through them.

One big issue that we all face - and an issue that can be a real pressure-cooker - is living bald versus wearing wigs versus medical treatments. I wear wigs; that's the right thing for me. Others live bald and it's the right thing for them. It might be that talking to a therapist may help clarify some of the feelings that you have one way or the other.

(Also, side note: I don't know if you've been to a dermatologist to determine that this is truly areata. If not, you should, just so that a blood panel can be done to make sure your thyroid and liver, etc., are working normally.)

Lots of love and support to you.

Comment by Vicki on January 24, 2017 at 2:55pm

Hi, every single second of the day I think about my hair situation.  Also my scalp itches like crazy so that is a constant reminder too.  It has taken over my life and l hardly see anyone that knew me before my hair started to fall out and thin.  I am better with people that I meet now through my dogs (they are the reason that I still go out to be honest).  I have an auto-immune condition, Sjogrens and possible Lupus.  I am on plaquenil and mepacrine but it has done nothing to stop my hair still falling out.  I have a large bald patch on one temple, my crown and then dry and brittle thin hair.  I had to shave it very short as you could see my scalp.  The hairs are very thin now.  I first noticed my hair falling out when I blocked a brand new bath in 2013.  I had a lot of stress before that, failed IVF, house move and problems with brother - it meant I was constantly worrying and not sleeping.  I think the stress triggered something and also I had low hormone levels.  Dermatologists couldnt agree what was wrong with me until they saw I had positive ANA and sent me to a rheumatologist. I am now losing my eyebrows and eyelashes.  I have lost hair on other parts of my body too.  I just want this to stop and my lovely thick hair to grow back again.  I am very sad, very low and I just cant imagine the rest of my life like this.  I dont know anyone else with my problem and it makes me feel so lonely.  Friends and family keep saying just buy a wig.  They dont understand finding a wig that suits me is so hard.  I have bought a few and they are awful, and uncomfortable.  Also mentally I just want my hair, my real hair back.  I would do anything to be me again.  I am here if you want to talk!

Comment by Pamela on January 24, 2017 at 2:58pm

First off I'm old - 69.  Mine first fell out when I was around 35 or so.  Stress related.  An out of state move and then husband lost his job, that did me in.   AU. I stayed that way for around 10 years.   I was mortified.  Didn't talk about it and wore cheap wigs.  By the grace of God I kept my hair until March of 2011.  My mother passed away the day after my Birthday.  September 29, 2010.  So again stress related, 6 months after that event.  I'm an only child and all the arrangements and other stuff fell to me.  Thank God for my husband.  He's always been my support, hair or no hair. I don't expect that it will come back at this age, so I bought a $4,000 dollar Freedom Wig. It's very nice, however I got a 10 inch and should have spent less money and got a shorter style.  I will never come to terms with it and no one, except my husband has ever seen my bald head.

Comment by Katz on January 24, 2017 at 3:19pm

I lost my hair suddenly, within 3 weeks I was bald, and it just happened in October 2016. I am a 57 yr old female. It was blamed on stress. I'm diagnosed with Alopecia totalis universalis. So the hair loss is all over my body and will not grow back.
The hardest part is that it is devastating to me, but other people will say "well at least it's not cancer" completely ignoring what I'm going through. Nobody can know unless they experience it.
It's very new to me I think I'm still in shock about it..but I cry every time I see a picture with my hair.
When I think about when I would complain about a bad hair day...now I would do anything to have hair..good or bad.
It will take time to accept, but I will get there ..with the help of a good wig, false eyelashes and eyebrow tattoos.
Hang in there.

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