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Myths and Truths in Causes, Treatments and Hope (Re- Posted)

Discussion in 'Women's Alopecia Areata' started by Joann, Oct 22, 2012.

  1. Joann

    Joann Moderator

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    Hi Girls,

    I thought it would be a good idea to repost this message that I first read on the NAAF message boards. It really struck a chord with me. The original poster had given me permission to post on these boards. It was a year ago now and worth putting up again for new members:


    Myths and Truths in Causes, Treatments, and Hope

    All, as I read through these posts I notice recurring themes in each of them. I wanted to make a post that would cover as many topics as possible in one place. I do not proclaim to be an expert, these are just my opinions.

    Causes:

    Simply, no one knows for certain. You are going to hear all kinds of wild theories (mine included). For every “cause†you will find 20 people that are convinced their Alopecia Areata, Alopecia Universalis, AT was caused by this very thing. However, there simply is not any science to back it up.

    Stress -- From what research shows, it isn’t caused by stress. So stop worrying about the fact you are somehow doing this to yourself and thinking if you can just relax your hair is going to come back. Most people are stressed on a routine basis. It is very easy to say “my hair started falling out in January, and that just happened to be when I lost my jobâ€. Sure, but it is just as easy to say it didn’t start falling out when your marriage was on the rocks, when you were pregnant, when your kid fell down the stairs, when your dog died, when you were in a car wreck, when your taxes was audited, etc. All this theory does is put the blame back on you. Stop it. It isn’t your fault. You need to focus on a positive self image with this disease, and blaming yourself for stressing your head bald doesn’t help.

    Diet – Again, there is no scientific evidence that eating any particular diet causes this disease. Being a vegetarian, a red meat eater, etc is not the cause. With that being said, eating a healthy well balanced diet will always help your body. It won’t necessarily cause your hair to grow back, but it might help you get to that age where you don’t give a crap what people think.

    Parasites, Fungus, etc. – No research shows this is the cause of Alopecia. The myth probably stems from the fears in kindergarten that if you weren’t clean you would get lice. If parasites were the cause, why do some people get Alopecia Areata and others Alopecia Universalis? Wouldn’t the parasites just travel over the whole body? Why don’t they show up in a skin culture that many of us have had?

    Shampoo, Hats, Brushes, etc. – The way you treat your hair does not lead to Alopecia Areata. It may lead to hair loss, but it is typically only temporary and does not progress beyond the affected topical location.

    Hormone Imbalance – Not proven, and in 99.9% of Alopecia Areata users all blood tests come back normal. If you do have something out of balance (iron, estrogen, T3) it is because you have something else going on in your system. However, don’t expect by taking an iron supplement that you are going to get your hair back.

    Ok, so what is the cause? Again, no one knows for certain. The best guess we have is that it is an auto immune system that basically causes the body to shut down the hair follicle. My personal research shows this is somehow related to the hormone receptors in the body and that it may center around the cortisol receptors in specific. However, at this point it is just a wild theory.

    Treatments:

    To put it bluntly, there are no long term viable treatments. It all comes down to the risk/reward ratio that you want to subject yourself to for the short term.

    For the purposes of this post I am going to focus on the medical treatments. If you want to rub onion juice, vitamin D, unicorn urine, or anything else on your scalp, go ahead. I don’t see how any of this will damage anything other than your personal time, pocket book, and social life (if you smell like onion flavored urine). There is no solid scientific evidence that any of these work as a “cure†or provide any results other than some short term hope.

    Prednisone – First, it will work. If you take 60mg a day every day you will get your hair to grow back. As long as you stay on this dose, the hair will stay. As soon as you quit, you will lose your hair. Now, for the fun part. Prednisone is a catabolic steroid. It breaks down muscle and connective tissue. Take it for a couple months and you can expect to have horrible mood alterations (you didn’t want to stay married anyway), your weight will skyrocket (always helpful now that you are single), and your ability to fight infection will go down (if you are going to be home alone might as well be sick). Take it long enough and you can shut down your liver, your heart can be squeezed off as water fills the sack surrounding it, your face will become round and bloated, and some other equally wonderful things will occur. You can also permanently alter your mood, your ability to fight infection, and you ability to control your weight. And don’t forget, as soon as you stop taking it, your hair will fall out rapidly. Of all the things that you can do, I cannot imagine how anyone would choose this treatment. I can’t imagine how doctors can in good conscience give you a prescription. Trust me, I know. All the above things I can testify to first hand. I took the drug for far too long out of a warped sense of vanity. Now I am damaged and bald.

    Cortisone Injection – It “might†work for the short term and only on very small patches. It might also cause a small patch to progress into full blown AT or Alopecia Universalis. It might actually cause the disease to progress, but it might not (see causes). However, I can tell you that they are NOT fun. I used to have 20 shots in each eyebrow weekly. While it did cause my hair to grow back, there was something real fun above feeling and hearing the pin pop through each layer of skin, followed by the joy of having what felt like hot lava shot into my face, and that was followed by 19 more of the same! And again, as soon as they stopped, the hair fell back out. Also, keep in mind that Cortisone is basically the same drug as Prednisone. While it is more topical and not as likely to cause all the same side effects, you are still messing with your system. And those people that tell you “it is a naturally occurring hormone in your body� Sure it is, but in small amounts and as a body’s response to stressors. Stomach Acid is naturally occurring as well, but I don’t plan on loading up a syringe and injecting it into my veins any time soon.

    PUVA – This is basically where they put a topical ointment onto your skin which irritates it, and then they put you in a tanning bed to cause a chemical reaction on the skin. Does it work? Very rarely, and again only on small areas and only for as long as you keep the treatments constant. It isn’t overly painful, and I don’t really see any long term negative health effects. It just doesn’t typically work well.

    SADBE – Similar to PUVA without the tanning bed. It is an acid that is meant to irritate the skin in the hopes you will get regrowth. One of the most usual treatments derms will give a child. Does it work? Maybe it will, but typically only on small patches and for the short term. But let me ask you this…..do you really want to rub acid on your kid?

    Topical Sensitizers – All similar to SADBE. Spotty, short term re-growth that is not sustainable. Can be expensive and may not be covered by insurance. Why waste your money?

    Rogain, etc – Rogain has been shown to cause re-growth in male pattern baldness. The disease is different. MPB is believe to be caused through DHT (DiHydroTestosterone). Rogain (and the more proper names of finasteride or dutasteride) basically inhibit the DHT producing enzyme. There is no scientific evidence that this is related in any way to Alopecia Areata, AT, or Alopecia Universalis. These drugs mess with the male hormone balance. Although the absorption into the blood stream is limited through topical treatment, I would certainly advise against this treatment for any female or any male under about 25. Even for those males over 25, it is basically a waste of money.

    Hope:

    The most common question: I just noticed my hair falling out, will it all fall out, and if it does will it ever come back? Simple answer: Only time will tell. This disease follows no common path. Some people have a small patch for their entire life. Some people have a patch that comes and goes. Some people lose all their hair within a year. Some people are bald for 5 years and then it all comes back. Some people have it forever. Sorry, but the question is just impossible to answer.

    In my opinion, I wouldn’t waste my money on trying any of the treatments, because usually they don’t work, and if they do, they only work for as long as you are committed to continuing them. Most of the medical treatments have side effects that are far worse than being bald. The only option I would propose at all is eating healthy. Don’t expect your hair to come back, but you will certainly have far more benefits including better physical and mental health.

    So what to do? Focus on your mental health. This disease will not affect anything in your physical life for the most part. If you have Alopecia Universalis, you are going to deal a little differently with dust (in your eyes, nose, etc). You may have a few more sinus problems, and dry eyes. But for the most part, you are going to lead a fully healthy and normal life. It is the way it affects you mentally that is the hardest. Unfortunately in today’s society so much is placed on different hair styles, colors, lengths, etc that we naturally feel naked when we are bald. For me, as a 39 year old man who has been bald for 20 years, it has become a part of who I am. It is my identity that I embrace and love. It wasn’t that easy when I was younger, trying to find a girlfriend, and scared about being “oddâ€. For a young child it is going to be especially difficult. If it happens to a kid, they are going to get made fun of at school. These are just the facts with school age children. Your job as a supportive parent isn’t to find a treatment to get their hair back, or to find the best fitting wig so no one will notice. Your job as a parent is to build up their self esteem so high that no peer pressure can tear it down. If you are an adult, you need to understand that after the initial shock, people are going to treat you exactly the same as if you had hair. I have never lost a job, been denied a seat in a restaurant, or pushed into a leper colony. You will find love, you will find a job, you will find friends, and you will find happiness. You have to believe it in yourself. You may go through depression, anger, self hate, etc. These feelings are totally normal and part of the process. You need to get a support group around you until you can stand on your own. Make your baldness a part of who you are. The sooner you embrace it, the sooner others can embrace you. In the meantime, don't beat yourself up, don't waste money on failed treatments, and don't destroy your body in the pursuit of a full head of hair.

    God Bless.

    CK
    **Please NOTE (time for the legal disclaimer). Nothing in any post is meant to be a diagnoses or advice of treatment options. Please take all of my suggestions with skepticism and do your own research, including speaking with your family physician.
     
  2. neencali

    neencali Guest

    Thanks. I talk to people all the time who have gone through it or are just starting. Everyone has a different story. I have no clue what caused mine to FINALLY calm down but I cherish this time right now. I have no idea what the future will bring but I plan to just take as good of care of myself as possible mentally and physically and I wear supplemental hair when I need it. It is a horrible process but "it" is hair not life, not my beauty, not my personality, and not the most important thing about me. Together we will all get through this.
     
  3. cbradley425

    cbradley425 Guest

    great post!! very informative
     
  4. Joann

    Joann Moderator

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    Neencali, I'm glad that the Alopecia Areata has settled down for you. :) I hope it continues to be in remission forever.

    Hugs,
    Joann

    - - - Updated - - -

    Thanks!!! :)
     
  5. DonnaL

    DonnaL Established Member

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    Great post! I really appreciated the chuckles as well :)
     

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