Comment by Visitor on November 1, 2012 at 3:15am

I have a nice story. While I was going through chemo (breast cancer), I met a very nice woman. She was a friend of a friend's. I didn't like to wear wigs or scarfs. I perfered to go out bald. Big jewelry, bold make up..I met my new friend at a dinner party. My new friend lost all of her hair right after she had her child, in 2009. The doctors all believed her hair lost to be Alopecia...We were the only hairless women in the room. :) She decided to start going out bald....don the big jewelry... she looked wonderful. She said I had inspired her.

Well, our once common bond was soon to come to an end. My hair was starting to grow back. My jewelery a bit smaller , make up a bit lighter. As my health was improving - and I had started Tamoxifen - I needed to find a hormonaly safe form of birth control. My doctor suggested the Mirena IUD. Well, when I read the warning that no one having or had breast cancer should use this IUD I was shocked that my trusted doctor would even suggest it. Baffled, I went on my support site breastcancer.org and found others just as baffled by their doctors pushing towards the Mirena IUD.

Here is the great part of my story. Before checking with my ladies at breastcancer.org, I had been at a party where my new friend and I were talking birth control. She said she loved the Mirena IUD...long story short while reading what my ladies had to say about the Mirena I found one member mentioning the side effect of Alopecia. Yep, you guessed it. I was up all night researching this link. If you look up our thread "Mirena IUD?" You can read all our findings. Lets just say the Bayer company -maker of the Mirena IUD had two very different listed side effects info for the doctors packect vs the patients packet. Plus doctors were putting in the Mirena IUD right after the birth of a child. As in my friend's case. NOW the maker of the Mirena IUD says their IUD SHOULD NOT be used in women who are breast feeding/ had just given birth.

I called my friend first thing in the morning. She had told me how she thought the IUD could have been at fault but several doctors all told her that was not possible. What I found very interesting - if you were to read the patients' info packet you would see the side effect loss or growth of hair ... the doctors' info packet actually lists the word Alopecia. How her doctors, and from my research - countless other womens' doctors have failed to acknowledge the Mirena IUD factor is horrible.

The end of this happy story - I shall be buying hair clips for my friend for her holiday gift. She has hair! Plus her mood swings have lifted (also a Mirena side effect). In her case, years of extensive medical treatments...and it was all solved in one night reading a forum. The internet is great. If you have the Mirena IUD please check out our post on breastcancer.org

Comment by Jennifer on November 1, 2012 at 6:23am

Very sorry to hear that you're feeling down. I developed Alopecia Areata suddenly in July, with no apparent trigger. I first found a small bald patch on the back of my head, and it quickly grew to about 3 inches in diameter. A week later, another bald patch formed on the top front of the right side of my head. I was told it's autoimmune, and prescribed a corticosteroid lotion to use twice daily. It helped with hair regrowth but about 3 months later, I've just had my first appointment for scalp injections and most of my hair has started filling in.

Something very important happened recently thought. My husband and I discovered that the apartment we'd been living in for the last 2 years has an extensive but well hidden black mold problem in the walls. Emergency construction to fix a water pipe revealed the problem. Black mold explains why my immune system went nuts because shortly after developing alopecia, I also developed asthma, chronic body aches and pain in my joints, an awful sensation of burning and tingling on various parts of my skin. Blood labs confirmed systemic fungal issues.

Thankfully we're no longer living in our old place. Two weeks out and I have no symptoms of asthma, my body aches have disappeared, and my skin feels better. I have an air purifier set up in our new place, and all our stuff has been cleaned. My hair has been coming in steadily.

To anyone who has suddenly found themselves afflicted with AA, AT, or AU, and developing other symptoms of illness relating to the immune system, check your living quarters for mold. Seriously.

Comment by asdf234 on November 1, 2012 at 8:50am

Thanks blackturtleneck, that was very helpful info on black mold. It may explain why I lost my hair and why the antifungals worked to stop the hair loss. Also, that IUD comment was very helpful. I do believe there was a link between when I stopped having thick hair and when I started the pill. It got thicker once I went off it and had my first child.

Comment by KG on November 1, 2012 at 12:00pm

Hello everyone. If inspiring stories are what you want then look to Kayla Martell for inspiration. Kayla Martell is an incredibly resilient individual. She was diagnosed with Alopecia when she was 11 and has not let it slow her down. She didn't let it stop her from competing in the Miss America Pageant and was voted Miss Delaware 2010 and a Miss America Pageant Finalist in 2011. Check out the links below to find out more about Kayla and her journey. I wish you all the best!

Kayla's Blog

Kayla's Twitter Page

Kayla's FaceBook Page

Comment by El Guitarrista on November 1, 2012 at 12:01pm

I don’t really come on here now since my hair has grown back. To be honest, I didn’t use this site a lot as I found that reading about other people’s experiences could make me feel worse at times.
I found myself empathising with people that had worse conditions than me and feeling guilty that mine wasn’t as serious, or it put ideas in my head that made me worry about other possible things that could happen to me…so it’s good to see someone asking for ‘hopeful stories’.
I’d always had a thick head of hair and needed to shave my face every day. (I am male by the way!)
I realise that it is a much harder condition to come to terms with if you are female, but as someone who didn’t expect my hair to fall out until I was much older, it really hit me hard at the time.
My AA started in June ’09 not long after I had been made redundant, with my facial hair starting to turn white or fall out in patches. By October ’09 I had noticed small patches appearing on my head and by February ‘10 about 40% of my hair had fallen out. I also had patches appear on my arms, legs and eyebrows. I went down the route of growing my hair longer to try and cover it, which seemed to work ok for a while...unless it was a windy day. I had to sometimes shave my face twice a day to keep clean shaven, as my facial hair grows pretty fast. (what was still growing of it)
I became very reclusive by this stage and lost a lot of confidence, choosing to bury my head in the sand, which I now realise was wrong as it just made me dwell on things rather than do stuff to take my mind off it.
By April ’10 small white fluffy hairs had started to appear in the patches that had been there the longest…and by July ’10 these hairs were starting to turn dark. Other bald patches were still appearing at this stage, but I knew by then that they would regrow in time like the others. It took about another 8-9 months for the patches on my head to all fill in with new dark hair.
By March ’11 most of the hair on my head was back to growing as normal…so about 18 months in all.
My facial hair took another 4-5 months after that to reappear…it is now all back to black!
The doctor had originally told me that once facial hair turns white, it usually never goes dark again. I am still very angry with him for this, as it removed any hope I had of it returning and made me feel a lot worse.
I have now proved this to be nonsense, as I can once again grow a beard that would put Blackbeard the pirate to shame! I made a point of telling the doctor this, so he doesn’t say this to anyone with this condition again.
My confidence has now came back even greater than before, but I am still aware that AA could return at any time. If it does though, I know that I can deal with it.
I have changed a lot as a person over the last few years and I am pleased to say that my perspective on life has also changed for the better.
I now avoid stressful situations when possible and find myself able to take a step back and not get so worked up by the trivial rubbish that used to get to me before.
I now have much more consideration and compassion for people worse off than me and I will not tolerate anyone being made fun of for any condition they have.
I suppose I have grown up in a lot of ways.
All the best to everyone on here :)

Comment by Anisha on November 1, 2012 at 4:24pm

I had alopecia areata as a child for a few years, then it suddenly stopped. I grew back twice as much hair as I lost. It was dormant for 25 years, then was likley triggered again during pregnancy. At first hair loss was slow and manageable, but then most of it came out, including eyebrows, eyelashes, and other body hair. I was referred to a specialist in Washington DC, and they put me on aggressive immunosupressant therapy, which included high doses of cyclosporin (the drug that transplant patients take so their body doesn't reject the new organ), along with intravenous steroids for 4 months, to shut down my immune system. IT WORKED. WELL. I grew back a full head of hair, eyebrows, eyelashes, etc., and shaved my legs for the first time in nearly a year. But as soon as I went off the medication (you can only take steroids for 4 months and cyclosporine for 7 months), hair began falling out again. However, it falls out a slower rate and is much more manageable than it was before the treatment. Some weeks I can even go out without a hat or hairpiece, and I now just let it go at the gym. The therapy isn't for everyone... it has it's risks - especially since it suppresses your immune system - and not everyone is eligilbe for it. But if you can get it, I would highly recommend it. Just seeing yourself with a full head of hair is invigorating, and gives you hope.

Anyway, I refuse to believe that this isn't curable. I keep hoping that it will just run its course and stop, like it did when I was 12. It might just happen to you too. Best of luck!

Comment by Sybil on November 1, 2012 at 6:22pm

I can't say we threw in the towel. We did try many options that were not invasive but came to realize this is what it is. If people can't accept you for who you are then we educate them. I can't tell you how many kids are just rude while others are completely blind to the fact Olivia has no hair. I tell kids that this is who she is, everyone has something, just some things you can see and some not.
I am not saying you are wrong in your feelings and you should accept, not at all. If you need to find something that works just make sure it isn't something that will screw up your body permanently. I do realize its easy for me to say this, but I too worry about my daughter and how life will treat her. Right now were probably at 97% accepting of who she is. It's YOUR attitude, not theirs, that will guide how you appear to them. Good luck and keep us posted

Comment by Anisha on November 2, 2012 at 3:49pm

That's going to be a tough lesson. Kids are cruel and ignorant - I know because I've been there. The best thing you can do for your daughter is try and minimize the emotional and pyschological impact, such as reducing stress (anti-deppresants helped me) and investing in a good hair piece so she's not labeled a freak by the other kids. But then again, it might just run it's course and stop, like it did with me.

Most people with alopecia would do ANYTHING to get their hair back. I would lick a toilet seat and eat cockroaches if I thought it would cure me. So immunosuppresant therapy was totally worth it.

Comment by Patti Clum on November 3, 2012 at 11:30am

My story:

About 3 years ago, I woke in the morning to a bald spot the size of a baseball on the left corner of my head, just below the crown. I wasn’t aware of any hair falling out, nor did I find any of the hair that was lost. I wasn’t even aware of the spot at all till my husband pointed it out. He told me about it, and recommended I see a doctor.
My first thought was the hair loss was due to my thyroid issue, so I went to see my endocrinologist. He looked it over, said it most likely wasn’t anything to do with the thyroid, that the thyroid does cause hair thinning, but not hair loss. Then fear kicked in, if it wasn’t the thyroid, what the heck was wrong with me, and was I in danger of a larger more complicated health issue.

Next I went to the family doctor. He thought perhaps it was a fungal infection, and sent me to a dermatologist. So on to another doctor I went. The dermatologist identified what was happening as Alopecia Areata. She told me it is an auto-immune disease brought on by stress. She basically told me that due to the stress in my life, my immune system was attacking itself, and the hair loss was the result. She said this affliction does not affect grey hair, which they do not understand why. She told me that it is treatable, and set me on a course.

Course 1 – A topical treatment. I was prescribed a spray that needed to be applied to the scalp twice per day. Initially, that wasn’t making much of a difference.

Course 2 – She prescribed steroid shots. I had 80 mg of Steroids shot into me every six weeks (40mg in each hip). The first round of these shots were fine, and I did show some hair growth, and strength in the root system. The doctor would test this by actually pulling on my hair to see if it came out easily. Round 2 of the shots wasn’t as kind. My entire body broke out in a rash. I went back to the family doctor who prescribed an allergy medication to combat the rash. Subsequently, the allergy medication then messed with my menstrual cycle, causing anemia. Again, I was prescribed something to combat that side effect.

Next, the dermatologist decided not to pursue the last round of steroid shots (they will only do 3 rounds of those due to the side effects and other medical conditions it can cause), and go back to course 1 with the topical treatment. This time around, the topical treatment started to cause migraine headaches, and such tenderness to the scalp that it made it very uncomfortable to sleep on a pillow. I had to wear a soft hat to sleep in.

I’d finally had enough. I felt as if they were making things worse with the medications, rather than solving the issue. So I went to see a Chiropractor/Acupuncturist/Herbalist, on the recommendation of a friend. I was hoping for a natural treatment for this affliction. He conducted a test called the Meridian Stress Assessment (MSA) (see information on that below).

Basically, what this test did was assess the function of the health of organs by measuring the energy of associated acupuncture meridians. From this, he was able to determine what vitamins and minerals I was lacking in my system to rebalance me, and what foods I was eating that were contributing to the imbalance. He then prescribed the necessary natural treatments, and put me on a specified diet to remove the foods that I seemed to have an allergy or issue with.

After about 3 months of natural treatment, my hair grew back in. It was weird though, it first came in white, then turned grey, then blonde, and finally back to normal color. I remained normal for several months, when once again my system became stressed and it started again. Basically, it starts with very small patches, about the size of a dime. For me, there would be roughly 3 or 4 of them in one area. These patches, as they grow, begin to connect to one another creating larger bald patches. I had about 5 areas on my head where this was occurring. I finally decided not to continue spending hundreds of dollars on treatments, after all – it was just hair. Any more, I can only keep my natural hair about 1 to 2 inches long, otherwise it falls out. Styling products also weigh my hair down too much and cause it to fall out. Unfortunately, health insurance does not cover this type of testing and/or treatment, so it can be quite costly. For me, and the level of imbalance I was experiencing, it was costing me $4,000 - $6,000 each quarter for testing and treatment.

I decided to take a different approach, by purchasing wigs. I took my husband to the store with me. For fun, I tried on a blonde/brown mixture (I’m naturally a dark brunette), his eyes lit up, and I was sold. I purchased my first wig. I wasn’t quite confident enough yet to try it out on my co-workers. Since it was such a drastic change from my “normal” look, I wasn’t sure how it would be received, so I continued to try styling my hair using large bows and hair ties to hide the spots.

One day, I just got tired of spending so much time trying to hide my affliction that I made the leap and wore the wig to work. It was a huge hit. I had so much fun. Initially, no one realized it was me, they thought I was someone new and just nodded as they walked by. But then it would hit them, and they would turn around and say “you changed your hair”. Everyone loved the new look. My husband loved it too, though he would sometimes forget what I looked like if we were in a store, and I’d have to say, I’m right next to you. LOL

At that time, I decided to use the opportunity to increase awareness to this disease. I became an advocate for communicating information to others who either are afflicted with this disorder and/or know someone who is. And, I purchased several more wigs. My collection is now up to some 20 or so wigs of various colors, styles, and lengths. And I have a lot of fun with it. While some people might suffer some initial embarrassment at my unusual comments about the hair (such as, one lady who asked what color my hair was and I told her plastic, and then said actually I don’t know I bought it this way), most are stunned at how beautiful and natural looking wigs are these days and are very inquisitive and curious about the fun I’m having with it. It has changed my life and my perspective.

When I was first diagnosed, I felt like a victim, and thought to myself, why couldn’t it just fall off my legs where no one would notice. Then I realized, it had to hurt so that I would notice it and improve my health, reduce my stress, and change the way I deal with things. I then realized the gift I was given. I was given the gift of changing myself for the better, and having fun along the way.

Meridian Stress Assessment (MSA)
What is MSA?
Meridian Stress Assessment (MSA) is a non-invasive computerized test assessing the function of the health of organs by measuring the energy of associated acupuncture meridians. MSA by Biomeridian is the only FDA-approved Class II system which accurately and objectively assesses meridian dysfunction using electro-acupuncture. Degrees of imbalance found in each meridian are analyzed and evaluated against various substances to identify possible allergies, infections, heavy metal toxicity and chemical toxicities.

MSA is a fast, accurate, repeatable, and objective profiling tool that assists your physician in identifying the optimal homeopathic, nutritional, and herbal protocol. This revolutionary profiling tool provides your physician with objective patient data which assists in determining the major systems and organs of the body that are stressed or weakened. This information along with patient symptoms is combined and analyzed to derive at an optimal, individualized and effective treatment plan to regain balance in organs, to resolve symptoms and disease process, to empower the body's innate healing powers, and to achieve holistic wellness.

How does MSA work?
The location of the test point generally corresponds to those of acupuncture points on the skin of hands and feet. Each acupuncture point is associated with a different organ or system. Concentrated electrical energy found at each acupuncture point can be measured, as discovered in the 1950's by Dr. Voll, a German medical doctor. The patented hand-held EPIC device is placed against the skin on the acupuncture points and identifies the degree of impedance of electrical charge in that acupuncture channel. The impedance values may be above or below the norm, indicating a stress or weakness in that particular organ system. These measurements are then memorized in the computer and analyzed. The final result is a comprehensive profile of the patient's condition in relation to various organ dysfunctions, allergies, toxicities, and deficiencies.

Once an initial evaluation of the stress in the various meridians and organ channels is identified, the measurements are re-computed against various herbs, vitamins, and homeopathic medicines to assess the optimal treatment plan that would correct the imbalances and organ dysfunction. Similarly, various medications, over-the-counter vitamin and herbal supplements already being used by the patient can be analyzed for their effectiveness in balancing or causing a dysfunction in the organ.
Is MSA the only test I need?
MSA is an adjunctive and powerful physician's tool used to better understand the total health of the body. It is not meant to replace regular blood, stool, or urine tests that your physician may recommend. A skilled physician will use the MSA along with a physical examination, history, laboratory testing, medical knowledge and intuition to derive at the possible diagnosis and optimal treatment plan. The MSA is a safe and effective tool to identify reactions to foods, environmental substances, toxicities, and possible infections.

Summary
In short, the MSA provides a completely non-invasive method for gaining valuable information about the body's vital functions. The primary objective of this procedure is to disclose patterns of stress and to provide feedback for use in a treatment program to help restore each system and meridian to an appropriate balance. MSA may also be used to monitor patient progress and healing, and to ensure the effectiveness of supplementation and medication. Once, meridians and organs are balanced, the disease process and symptoms resolve and the patient gains optimal health and wellness.

I completely understand the fear and frustration that one goes through when first diagnosed with this disorder, but I do want to encourage you to try some alternatives. Losing your hair is not the worst thing that can happen, it's scary and frustrating, but not life threatening. We are healthy, vibrant women, and our beauty comes from within, not on the outside. Those who love us, accept us as we are and support our changes. Take this as an opportunity to create a new, more beautiful (however you choose) you - inside and out. A person's beauty only gets better with a better perspective on life. :-)

I hope this helps.

Comment by Mary on November 3, 2012 at 5:53pm

I too am on my way to hair regrowth - including eyebrows!!
I shaved my head in June, 2011 & it's been a long haul, but I think it was worth it all. I
use dithro cream - I'm up to 40 minutes a day - 5 times a week. I go for cortisone shots on my scalp (I was able to stop the eyebrows.) I also use rogaine most nights. It has worked. Hang in there.

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