Alopecia World
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New to all of this...advice appreciated!
I thought it might help me come to terms with whats happening to me by telling my story. I'd love to know how this disease has affected others because I'm still very confused as to what path it may take.....there seems to be a lot of conflicting information out there!
My name is Laura, I'm an 18 year old uni student living in Melbourne, Australia and was diagnoses with alopecia areata about a month ago. I had just decided to dye my hair red and as it was very long I used two packets of the dye instead of the usual one. Shortly after my hair started falling out. I didn't worry too much, I assumed it would just stop, but it was relentless. I woke up one day with a large bald patch underneath the top layer of my hair and went to go see a doctor.
I actually assumed it was the hair dye that had caused it, so I had written up a letter to the hair company and was planning to get a medical certificate from the dermatologist to say the dye had made my hair fall out. (being a law student this was actually mildy exciting for me :P)But to my horror, he said it was a total coincidence that it happened to start falling out at that time and I in fact had AA.
I maintained a really positive attitude until recently. I wore lots of hats and berets and scarves but could still get away with not wearing anything and just styling it carefully. But the hair has just continued to fall out, and its impossible to disguise anymore. the other night I had a break down. I'm an 18 year old teenager, I already have massive self esteem issues (like any teenager I suppose), but this was just the icing on the cake.
I went and bought a wig last weekend and have started wearing it at uni. It was nerve wracking rocking up to uni with completely different hair. Nobody said anything....I thought they were being polite, but turns out they didn't even notice! They just thought I dyed it! I'm finding the wig a hassle, but at least I feel more confident now. I just worry a lot about it falling off, especially when i'm out night clubbing etc.
I have a couple questions: I've been taking prednisolone without any improvement to my condition, and am going to start getting injections from the dermatologist. Has anybody had success with these? Does this disease vary heaps from person to person? has anybody had AA and their hair has grown back (and how long did it take)?
If it gets to a stage where there is more bald than hair, would you suggest shaving it all off? how does it feel to do that?
Thanks for reading, I'd love any comments :)
My name is Laura, I'm an 18 year old uni student living in Melbourne, Australia and was diagnoses with alopecia areata about a month ago. I had just decided to dye my hair red and as it was very long I used two packets of the dye instead of the usual one. Shortly after my hair started falling out. I didn't worry too much, I assumed it would just stop, but it was relentless. I woke up one day with a large bald patch underneath the top layer of my hair and went to go see a doctor.
I actually assumed it was the hair dye that had caused it, so I had written up a letter to the hair company and was planning to get a medical certificate from the dermatologist to say the dye had made my hair fall out. (being a law student this was actually mildy exciting for me :P)But to my horror, he said it was a total coincidence that it happened to start falling out at that time and I in fact had AA.
I maintained a really positive attitude until recently. I wore lots of hats and berets and scarves but could still get away with not wearing anything and just styling it carefully. But the hair has just continued to fall out, and its impossible to disguise anymore. the other night I had a break down. I'm an 18 year old teenager, I already have massive self esteem issues (like any teenager I suppose), but this was just the icing on the cake.
I went and bought a wig last weekend and have started wearing it at uni. It was nerve wracking rocking up to uni with completely different hair. Nobody said anything....I thought they were being polite, but turns out they didn't even notice! They just thought I dyed it! I'm finding the wig a hassle, but at least I feel more confident now. I just worry a lot about it falling off, especially when i'm out night clubbing etc.
I have a couple questions: I've been taking prednisolone without any improvement to my condition, and am going to start getting injections from the dermatologist. Has anybody had success with these? Does this disease vary heaps from person to person? has anybody had AA and their hair has grown back (and how long did it take)?
If it gets to a stage where there is more bald than hair, would you suggest shaving it all off? how does it feel to do that?
Thanks for reading, I'd love any comments :)
Replies to This Discussion
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Permalink Reply by Tallgirl on
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Read all the blogs, archives and discussion topics on here. Go to Groups and find one where people share your hair stage. Also, look at all the members to find support in cities near you, so you have a pal through all this. Finally, see photos and enter conversations so you know who you want to "friend." Then you can private message those for whom you have more questions. You asked many questions, which have all been answered on this site many times. The concerns and responses are here. Be prepared to not always like what you see, however! Good luck.
--The One Who Keeps Waking Up in the Middle of the Night for Some Unknown Reason
(By the way, I hated the shots, and stopped them completely. I'd rather be bald with my money going to great wigs!)
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Permalink Reply by Vesna Devcic on
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Hi Laura
I am a part of the Australia Alopecia Areata Foundation (AAAF) and we are all about awareness and bringing together those that need support and answering questions and putting them in touch with Support groups. We are actually based in Melbourne but have support groups in other states. Please see our website www.aaaf.org.au and you might find quite a bit of information on there. We also have a facebook page with the same name if you are on it...
In October we have our awareness week (10-16) and have quite a few activities/events and information nights. We would love to meet you and I have just started to try and get coffee catchups with people in Melbourne started...we had one a couple of weeks ago which was great!
Anyway hope you get a chance to check out the info on AAAF site!
Take care and I am sure you will find it refreshing talking to so many people with Alopecia that have different viewpoints on the condition!
Ves :D
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Permalink Reply by FANCY1024 on
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Hi Laura, First and foremost, you are not alone. We are all here to help and support you! AA does affect everyone differently. The injections also work differently for everyone. I lost a lot of my hair for the first time when I was 31 years old after a very serious illness. At the time, I thought it was caused by the steroids they gave me as a cure. It turns out it was AA. My hair fell out for over six months and I had bald spots all over my head. I did not get any treatment at that time as I figured when I got off the steroids it would grow back. It did slowly come back. After about a year and half, I had a full head of hair again. It was thinner than before and still very fine but it was there and it was my own natural color. My hair dresser indicated I was lucky as sometimes when the hair grows back, it sometimes comes in white/gray. I had no further issues with my hair until 13 years later when I noticed my hair falling out again. I was also having thyroid issues but doctor said that was not the issue (You can see my full story on my profile for further details). So I went to a Dermatologist and was diagnosed with AA. I had injection treatments for over year and had no regrowth at all. We finally gave up on the injections. I went out and got a wiglet. I was terrified the first day I wore it to work. I thought sure that everyone was going to be staring at me. A couple of the men working with me asked if I changed my hair style and said how great it looked. The ladies working with me knew I was getting a wiglet and they were amazed at how natural it looked and the color matched perfectly. Their comments helped my self-confidence more than I can say. I’ve now ordered my first full wig which I pick it up tomorrow. I’m so excited about it. Can’t wait to see how it looks. My hair loss is not bad enough yet for a full wig but I want to have it in case I need it. My Dermatologist indicated there was always hope for regrowth but she was not too confident in those words. I got the impression from her facial expression, some of her wording and body language that she really did not expect it to regrow and it’s still falling out. Regarding the injections, I’ve read a lot of comments on this website about them. I feel they are worth trying even though they did not work for me. If you do have regrowth, do not stop doing the injections until the doctor actually says you are in remission. I’ve heard a lot of people say, they stopped getting the injections when their hair started to grow back and it just fell out again. Regarding how long it takes to regrow, that all depends on the person. When/if it grows back, be patient and let it grow. Another thing, try not to get stressed out about the hair loss as it only makes it fall out worse. I know it’s easier said than done. My family told me that so many times, I just wanted to scream at them to say “just shut up and when you get this, you tell me how to not stress about it”. I knew they were right but it was so irritating to hear them say it over and over. So having said that, do the best you can! Good luck to you and join a support group, it does help. Many hugs, Di
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Permalink Reply by Nick on
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when i was on a course of prednisolone it took approximately 3weeks to see any result. Yes it brought back most of my hair but the side effects for me were awful. Not the good kind of weight gain, vision going temporarily blurry sometimes, and puffy face /moon face. Hated it lol.
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Permalink Reply by Greg on
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Hi Nick, Did you lose your hair immediately after stopping the course? Just curious! Thanks :)
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the hair gradually dropped about 2 months after the course and the side effects lingered for about 3 months after the course had ended.
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Thanks for that. Not worth the hassle really, but you had to try to know that.
Cheers!
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My daughter is 21 yr old and had a similar experience. She is apprehensive about wearing her wig and one day wore nothing and all her friends stared at her. I sent your post to her so that she will take comfort that no one noticed the different hair.
My daughter had the prednosolone shots but we did not find they helped. She is doing a treatment that is called DCPC that is causing white hairs to grow back. I am unsure if it is available in Austraiilia.My understanding (my daughter was diagnosed in April) is that results definely vary from person to person.People have had hair grow back but time frames differ for people.
My thoughts are with you and my suggestion is to take it one day at a time.
all the best.
n.f.
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Hi Laura,
I lost all of my hair in a period of 2 years. I am not confident enough to go bald, so I have been wearing wigs. I started with a cheap but nice one. It never felt comfortable and I was constantly afrid it would get pulled off, or blow off in the wind!!! I started with Hair Club and wore their untis for a year. They are taped on with double sided tape and it changed my life. I could let the wind blow, babies could pull my hair, and no chance of it coming off. It was expensive though and I did some research and found companies that I could buy direct through and do the application at home. I've been with Hair Direct for over 4 years and could not be happier. They have a payment plan, and many different options. You can get whatever color, highlights, length, etc you want and they will even cut it for you. I order online but have had the same customer service rep for all 4 years. The application is really easy, once you do it a few times. I am now experimenting with brows and lashes, as I miss them the most!!! There are good links on this site. Just try to keep a positive attitude, know you are now alone, and do research. There are a lot of good products and info on the web. Best of luck!!!
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Permalink Reply by Suzanne Kennedy on
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Hi Laura,
Welcome...you've come to the right place. A couple of years ago, I ended up with about 10 bald spots. I got the steroid shots and they happened to work for me, although I know they don't work for everybody. They hurt like crazy, but I figured it was worth it.
The thing that helped me the most was going to see a counselor. She helped me deal with my grief (yes, you can grieve for your hair!) and manage stress. After a point, I knew that whatever happened, I'd be okay. As it turns out, almost all of it grew back, although some places are thinner than others.
Know this- other people will react they way you let them. Walk around like you are hot stuff and people will think you are hot stuff. The most "successful" or happy people on this site own it and embrace it.
Good luck...you ARE going to be okay.
Suzanne
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hiya laura,
My names steph i am 19 and have only had AA for about 8 months. I have been on this site loads but never really found anyone whos story i felt i could relate to but the i saw yours!!! What is so weird is i had been dying my hair red for a year or so now with just normal shop dye, then i started using proper salon stuff to get the colour i wanted and thats when my friend who is my hair dresser was cutting my hair and found the bald spot at the back of my head. i went to the dermatologist and he told me the same that it wasnt to do with the hair dye. It took me months to be able to deal with it and i still have very bad days but it does get better i promise. With regards to your questions it affects everyone differently and the treatment does aswell so you are just best trying things and seeing what works for you! With my first patch that i had well you wouldnt even know it had ever been there it has grown back, although i have got 4 more patches and for a few months they wernt growing but what worked for me was i changed my contraceptive pill to the mini pill where you dont have a break because it is proven that normal pill can have a serious affect and sometime even be the cause of AA so if you are on the pill i would think about changing, it may not work for you but it is something that has worked for me. I cant give you advice with regards to shaving your head i dont think anyone can because it is how you fell at the time and if that is something you can do and be able to cope with. I hope things get better for you just trust me give it time and keep your spirits up you will get through this dont let it beat you.
steph
xx
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Permalink Reply by laura on
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Thank you all for your absolutely amazing support! I am incredibly touched by your stories and advice and you have helped get through the really tough days.
Just a quick update: Yesterday I shaved everything off! I still have healthy hair on about a third of my head but other areas were still falling out. I just wanted everything to be the same length (yes, my bald spots have started to grow back, it's very fine but really encouraging! I find it a bit strange that its falling out at the same time that its growing back. Has anyone else experienced this?)
Thinking about ditching the wig when it gets a little bit longer. It's such as hassle, especially with the hot Australian summer coming up, I'm not sure how I'll cope! Might just grin and bear it and stick to scarves so I'm more comfortable.
Thank you again, you are all amazing
laura xox
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