0

Sara

38, Female

Annapolis, Maryland

United States

Profile Information:

Relationship Status:: Single
About Me:: I was diagnosed with "alopecia areata totalis" in August 2007 at Johns Hopkins.

I had super long hair, and lost about 95% of it. However, after tons of Anthralin, chinese herbs, acupuncture...and who knows what else...my hair grew in very thick! Hurray.

Things are going much better for me now, and I hope to provide support and friendship to others who have or have had alopecia.

I was very lucky to have very understanding friends and family, but I know not everyone is as fortunate.

Send me a message, I'll be there!

**update** - I keep going through bouts of alopecia, but it has never been as bad as it was back in 2007. Every few months I'll get some bald spots, use my anthralin, and then some regrowth happens. My doctors and acupuncturist can't figure out what the cause is, just that anthralin tends to work on it, as long as I keep to it. Which is very taxing! Ha.
Do you have alopecia?: Alopecia totalis
Are you age 18 or older?: Yes - I am 18 or older

Comment Wall:

kastababy

Welcome to our site!!! I'm glad to see you here!!!

Mar 8, 2008
Mama B

Hi Sara,
It's nice to meet you! Yes, my smiley has alopecia! I don't have any recent photos of me, so this will have to do. Looking forward to talking with you & the other members!

Tammy

Mar 8, 2008
Pat

Hi Sara, it's wonderful you're having regrowth! I believe I am very fortunate to have had alopecia in my late 30s, not earlier. It's devastating whenever we get it, at least initially, but I really feel for you younger ones. Having said that...I get a little worried to think of myself in old age - and bald to boot :)

Mar 9, 2008
Pat

I know exactly what you mean. When I had the regrowth I was so nervous about it. Then when it fell out again I was even more devastated than the first time cos I knew what to expect. That's when I went online and found the alopecia group..the members there gave me the courage to keep going when all I felt like doing was hiding away. The trouble with aa is that we never know what it's going to do next, and it can do your head in. Stay strong!

Mar 9, 2008
Mama B

Yes! The big smiley with aa was kinda blinding me. I'm going to put an old picture of me up (it's the only one I have right now)

Mar 9, 2008
Dotty

Hi Sara,
Nice to see you here. What a great site huh!!! Hope to chat much more with you. Glad you added me as a friend.

Mar 9, 2008
Melissa

Hey Sara! Nice to meet you, are you going to the conference in Kentucky this summer?

Mar 9, 2008
Melissa

I think it is June 19-22. Go to the naaf website and read about it. They are AMAZING!

Mar 10, 2008
Ashley

Thanks for the add! I'm glad to see you on this site, I'm sure you'll fall in love with it like i already have. =)

Mar 11, 2008
Lisa

wow, tell me more about the acupuncture and chinese herbs, I would be interested in any of the above. I have Alopecia areata and I have stopped injections. I don't feel like they were doing anything for me.
Best,
Lisa

Mar 12, 2008
Lisa

That is so amazing. I am so happy for you. I am going to have to check out if there are any around here. I live in just about the smallest town in New York State. I will keep you posted. Keep me posted on your hair.

Mar 12, 2008
sherrie

thank you so much, she is a handful! It's nice to meet you!

Mar 13, 2008
Susan

Hey Sara! Thanks for replying to my post. I love your attitude and hope that one day, I will be able to be the strong woman that you are. I think you probably have AA which is different from mine. I dont think mine will come back like before and I will have to cope. I live in North Carolina, I wish I had someone like you close to me because I know it would make me stronger.

Mar 13, 2008
Julie

Really great attitude! I would really liek to hear about teh chinese herbs and acupuncture. My husband actually just told me he heard about using actupuncture for alopecia. My mom used to see homeopathy remedies but she has passed on and I don't even know where to begin looking for info. I hear you about the wig thing. It's such garbage that insurance doesn't cover wigs with people with Alopecia.

Mar 13, 2008
Susan

I have tried nioxin, it seems to upset my scalp. I have a very sensitive scalp and it made a rash appear that was very itchy. I use rogaine 5% foam at night.

Mar 13, 2008
Susan

The pictures of me on my page are very recent. I have enough hair to just wear my hair right now, but I have to use concealer and style it to death.

Mar 13, 2008
Susan

what is anthralin?? is it a shampoo? how much acupuncture did you have?

Mar 13, 2008
Susan

OUCH! That would be horrible. Did it help though?

Are youstill doing accupuncture?

Mar 13, 2008
Susan

Thats cool, I wonder if it would help me.

Does insurance cover it?

Mar 13, 2008
Ashley

Thats really cool, we have great taste in photographs =) Thats a really good idea, what you did, to take pictures weekly. Thats really interesting, & who knows, maybe that could be used to document alopecia. Thats really cool that you did that. Very smart, I never thought of that. I just took that picture because I was feeling artsy one day & planned it in my head, thought it would be cool =)

Mar 13, 2008
Dotty

It's national care week...
time to send messages to all your friends, telling them how much you care about them.

Without friends
you would be missing out on a lot.

A friend should be radical;

They should love you when you're unlovable,

Hug you when you're unhuggable,

And bear you when you're unbearable.

A friend should be fanatical;

They should cheer when the whole world boos,

Dance when you get good news,

And cry when you cry.

But most of all, a friend should be mathematical,

They should multiply the joy, Divide the sorrow,

Subtract the past, And add to tomorrow,

Calculate the need deep within your heart,

And always be bigger than the sum of all their parts.

I care about you.
Have a nice day, and
I'm glad we are friends!!! Delete Comment

Mar 17, 2008
Matt

Yeah, it's not a great movie, but it is quite affecting when you watch it through the lens of alopecia.

The dude's freaky abilities (Jeff Goldbloom: "He is electrolysis." -gasp!) take a back seat when you consider that his lack of hair is more than enough to account for his extreme introversion.

Apr 8, 2008
Jill Newman

Hey i'm Jill your story makes me very hopeful, i'm very happy for you that all your hair is growing back .. THICK!! i wish mine would :( i dont have alopecia totalis, only areata, but sometimes i feel like that is worse because i feel so in between because right now i am on the verge of wondering if i want a wig or if i want to keep gruelingly hiding my spots and styling my hair perfectly so no one can see it.

I would love to hear about the chinese herbs you used and what Anthralin is. I tried acupuncture about 3 years ago and never really helped much.

Lastly, you mentioned in your about me that you felt so bad about yourself when things were bad, and i'm kind of in that position right now, i would love to just chat about things and how you dealt with everything back then

May 5, 2008
Drew

Hey Sara, I was browsing through the forums and searched for acupuncture since I have just began going to have that done. I was wondering when you went (since it worked) what areas and energies they focused on. Thanks for your help

-drew

May 18, 2008
Drew

Thank you for all your help! My accupuncturist said she wants to focus on the kidneys and their energy, so at least I know I'm on a similar path that you were on. The 5-star hammer sounds more like torture than treatment, but right now I'm getting Gua Sha which is basically taking a dull wooden knife and scraping my head until it turns a redish color to try and draw blood to the area, I had to sign a bunch of waivers saying that is intended to cause bruises and all this other stuff. But if it helps then I'm willing to try it. If all else fails going to an accupuncturist will relax me and put me at ease for a little while which with this disease I welcome. Thanks again for all your help, I'll keep you updated.

May 19, 2008
LeslieAnn Butler

Oh, I'm so glad you're feeling better about things.
This is a great place for support.
I've had AU 20 years...not much support back then! That I knew of, anyway!
LeslieAnn

May 30, 2008
Drew

So I've been going to the acupuncturist for a while now and today she finally used what you were talking about the 5-star hammer, only mine has 7 and I have to do it myself once a day. But like you said, anything to make it work. Hope things are going good with you.

Jun 17, 2008