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Immune system

Discussion in 'Women's Alopecia Areata' started by ginawat, Mar 27, 2008.

  1. ginawat

    ginawat Guest

    Merry - I knew it - I really "felt" you would respond this way. Obviously the fact that you and I (and a few others) don't suffer the nromal colds and flus AND have hair loss doesn't mean we found the answer here...it does however valid that I am not alone in my thinking.

    At every doct appt I have had with regards to my hair I have mention two other things - one is that I never get sick. The docs response to this is "consider yourself lucky" the other thing I mention is my weight. I eat more than most female and even more than most males. I weight 128 lbs and I am 5'7". I can't gain weight...I have TRIED...meaning I have set out to gain weight (ate foods I normally wouldn't - as an experiment) and can't/won't gain weight. I can eat bigmacs and shakes everyday and while I would think a normal person with a normal metabolism WOULD gain a pound or two - I do not. Guess what the doctors repsond? You guess it..."consider yourself lucky"

    Well, to me these are both things realted to MY hairloss (I'm not saying it is related to everyone elses condtion!) - I'm saying I am certain that both are related to MY hair loss.

    Merry - I too have ezema (of the scalp in the form of Seb Derm) and wehn my hair is not falling I do not have this condition.

  2. ginawat

    ginawat Guest


    Thank you so much for responding. No one needs to worry about me w/regards to taking drugs in effort to save my hair. While I hav considered everything (evening selling my soul to the devil!) I have not resorted to any drugs. hisis because I don't want to sacrifice my overall health to save my hair. In addtion to that I don't want to cause my body more harm....I truly think something is out of whack and adding drugs will only clutter that issue.

    The body is resilient and I think I need to find out the cause of this and try to fix it. While I know this is going to be a really personal journey I come here seeking answers to questions - in hopes to find a "link" or a "common denominitor" so to speak - that we might all share.

    I do not think we were "born" to this - that we are predisposed to this. I know this gets others ticked off at me...but it is my opinion and I have a right to it.

    I believe we are all healthy....our labs reflect it. But, I also think that being TOO healthy (ovr active immune system) can be detrimental in the long haul. Your story kind of reflects this the addition of more automimmune disorders)

    I think getting the immune system BACK ON TRACK is the only answer. How to do that is the BIG QUESTION.

    Bottom line - I don't think any of us should accept this. Yes, I think we an and should accept our hair being gone - because it IS ony hair. But ignoring the BIG PICTURE can be far to dangerous in my opinion.

    Gina (sorry for the type-os)
  3. ginawat

    ginawat Guest

    Carol ~

    I don't think this has so much to do with ONLY our hair - I think it has to do with the overall picture of our immune health. Losing hair is only one by-product of an autoimmune condition. Left go I think we all stand to gain more and more automimmune related problems down the road. Joann is a perfect example of this. She started off with one and now has 3 auto immune conditions.

    In addition, while I applaud you for being not only well adjusted to being bald (and beautiful!) you have to see where a woman who is the same age as you (me) might have come to prefer all that she has ever known and become adjusted to - - and that is HER OWN HAIR. The way oyu feel about being bald is the way I feel about having my hair. I prefer it.

  4. Joann

    Joann Moderator

    Mar 25, 2005
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    Hi again Gina,

    I'm with you. I too would prefer to have my own hair but since it doesn't seem to be in the cards for me I'm glad that I could adjust and accept what has happened. I'm in many Alopecia Areata support groups and other that Carol I have never heard anyone say they prefer being bald.

    I personally feel that prolonged stress can trigger Alopecia Areata. I also feel there are other triggers judging by what those diagnosed with Alopecia Areata have revealed on the messageboards.I've heard from those who were in a car accident or went through a death of a close family, after childbirth, vacinations & the list goes on. However, there is more involved, some kind of genetic marker that makes certain individuals suseptible when triggers like this occur.

    I feel that the last treatment I tried to my Alopecia Areata may be what triggered my Sjogren's. Most treatments this one included work at tricking the immune system so that it doesn't mistakenly attack the hair follicles. With the horrendous allergic reaction I had on the treatment I think somehow my immune system was altered in a negative way. Hence the Sjogren's. I have had one doctor admit that the immune sytem is so very delicate and you want to be careful when you start fooling around with it
  5. sgomez33

    sgomez33 Guest

    Oh my gosh! Now I'm worried. I too had a baby in Nov. of 2004 and I can honestly say that he has NEVER been sick a day in his life. Not one infection of any kind. I've never even had to take him to the doctor for anything other than a well check-up. He also has never been to daycare or preschool. I thought he was so healthy because I nursed him for so long. Should I be concerned???
  6. sgomez33

    sgomez33 Guest


    What is Sjorens? I'v never heard of it. You are so inspirational. I love reading your posts. We very much share the same attitude about our conditions. You have a way of saying things that puts things into perspective. Thank you. :)

    P.S. I was also diagnosed w/ hypothyroid after my fourth baby was born. :( But you're right, I would rather have these autoimmune disorders than the other ones you listed.
  7. ginawat

    ginawat Guest

    I believe it 100% (immune system being delicate) I also agree with the stress comment....and that is the one area where I DO believe genetics comes in. Yes, genetics!

    I was meaning to create a post the other day - in relation to a comment on stress. While we have all come to the agreement that a doctors dismissing our hair loss to mere "stesss" can be absurd....there might be something to this diagnosis afterall (in my opinion) and although it might not be the only reason I think it plays a part for some of us.

    I believe it was Merry who last mentioned stress and how normal life stresses should not cause hair loss - I couldn't agree more. It would seem more understandable that hair falling from ones head would be more connected to SEVERE stress (death, etc) BUT...I have some food for thought here and I'm curious to see how others react to this question:

    What if you are the type of person (through lets say genetic background) who can't COPE/DEAL with normal life stressors like others seem more equipt to do? What if you aren't as strong emotionally as another and react to stress in a more dire way? What if day to day stresses make oyur body feel/react like you actually experienced a death when in reality you did not?

    Some of us might be wired differently. Some may even be able to handle SEVERE stress like death better than others can handle NORMAL day to day stress. What if one has the inability to handle a simple life stress and their body reacts as if it is a more severe stressful event - the results might be the same as if they actually had the death, car accident, etc even though they did not.

    I am that person....I get it from my dad who gets it from his mother. Genetics? Learned behavior? I'm not sure but it still exists for us. We don't handle stress well - big or small. Anyone that knows us agrees. We tend to worry ourselves sick. We DO sweat the small stuff! I get worked up and worry much easier than the average person does under the same amount of stress. I have seen people handle severe stress better than I can handle not-so-severe stress! My intolerance to stress has built up over the years and hit an all time high right before/after my son was born. At 36wks we were told he might not be born healthy (I won't bore you all w/details again) But, by the GRACE OF GOD he was born healthy after all! My emotional health suffered because of all of this. I was a worrier and stressball before my son - I was off the charts after this scare. The worry over my precious son and his overall health and welfare crippled me! As for my dad...he is 72 - has never eaten fast food in his life, is slim an fit as a fiddle, never drank or smoke in his life, lead the "cleanest life" of anyone I know. 4yrs ago he had to have 7-bypasses (yes - 7! We didn't even know 7 was possible) What do you think the doctors attributed this to? STRESS and nothing else.

    That is where I think stress can in fact play a HUGE role in this "syndrom" and that is why it should never ever be dismissed as not a true underlying "cause" to some of our autoimmune issues and the symtoms they produce (hairloss, hypothyroidism, MS, Sjorgens, etc) and might also what hinders us from recovery.

    Sorry to be so long winded today! I have so many theories about all of this!

  8. ginawat

    ginawat Guest

    ABSOLUTELY NOT!!! DO NOT WORRY AT ALL!!! Thatis wonderful! BUT - don't get worried when he does get sick w/colds, etc more - like after he gets in more contact with other kids, etc. That, too is normal!

    Its wonderful that they are healthy for so long....!! I also nursed!!
  9. sgomez33

    sgomez33 Guest

    Thanks Gina,

    I just read your last post, and wow, you really said it! That made me think very differently about how we handle stress. I'm also a worrier, and tend to sweat the small stuff.Housework, dinner, baths, bedtime, homework, light bill,family,friends, etc.... I know that it has really affected my health, too. I don't handle change well at all! And any little bump in the road throws me off. But I've found that as I get older, I am able to handle myself better. I'm a slow learner, but I'm getting there. Thanks for your words. Sarah
  10. Blue Bird

    Blue Bird Guest

    GINA, that is ME!! I worry about everything, get stressed over SMALL things, and I am high strung...it is not fun
  11. ginawat

    ginawat Guest

    I would not be surprised if manyof us have this type of personality....it is the only true "common denominator" I have found so far.

    Have you head how the nervous system is closely linked to ALL auto immune disorders?

    How can we get our nervous systems in check....and get our immune systems regulated?
  12. angieangie

    angieangie Guest

    LOL! I have a super bad cold right now. It makes my nose bleed every 3 hours grrrrr!! Ever since I became anemic, I get colds and fevers all the time.. it's crazy!
  13. Blue Bird

    Blue Bird Guest

    Its so sad to watch your hair worsen as you are taking meds for the hair loss....also its hard when you think you see new growth, but see further thinning at the same time, cuz it gives false hope :(

    I guess the only explanation is my hair is miniturizing, and the new growth I see is just shortened hairs on the way to falling out.

    :shakehead: :shakehead:
    Very down today, my hair looks horrible and feels thin too...
  14. ginawat

    ginawat Guest

    BH -

    I'm sorry you are having a bad day. Been there and all I can do is offer you a shoulder and an ear.

    Since you posted here (Immune system subject) I figure I'll carry on my rant. A light bulb really went ON today for me. After talking to Merry and others with either AT/Alopecia Universalis or Alopecia Areata as well as researching autoimmune disorders I feel pretty confident once and for all about what I "have" so to speak....and it isn't Androgenetic Alopecia or TE but more likely diffuse Alopecia Areata (autoimmune).
    Since you suffered with Alopecia Areata in your childhood and since it is a chronic condition that comes and goes - I wonder why you aren't convinced that this is what you "have" (for lack of a better word)

    I guess my question is this: Why is diffuse Alopecia Areata not the FIRST thing you think it is that oyu have? I'm asking because I think if I had Alopecia Areata in my childhood and now as an adult was losing hair again (even if the pattern is different now compared to then) I would automatically assume my Alopecia Areata reared its ugly head again - except this time in the form of diffuse loss versus patches. Aren't people who have experienced Alopecia Areata more prone to it over and over again throughout life?

    This could be the reason the anti-androgens aren't working for you - - because androgens have little to nothing to do with what you are battling.

    What do you think?

  15. Blue Bird

    Blue Bird Guest

    I think it is entirely possible that I could have diffuse Alopecia Areata....The only way to tell is to get a biopsy. I need to call around and find out who will do one. Most derms WILL Not do them, cuz they figure its a waste of Time and $$ (they think they can tell what you have by looking)
    SO it sucks. But yes, I suppose my next step would be a biopsy.

    I have actually had Alopecia Areata 3 times, not only once. The last 2 times were extremely mild, with just one small spot then growing in after months. Also, the last one was this past July....so maybe it kicked off diffuse Alopecia Areata...could be!!!! But then they say Androgenetic Alopecia is FAR more common that Diffuse Alopecia Areata and you can have both Androgenetic Alopecia and Alopecia Areata, or TE at the same time...Good thing I am looking into wigs!!

    No one understands around me....it sucks.
  16. alicat

    alicat Guest

    me too!

    my hubby calls me a worrier. i worry and stress about everything. i'm nuts!! haha.
  17. alicat

    alicat Guest

    i have heard ladies here (and on other sites) say that because diffuse Alopecia Areata is sooooooooooooo extremely rare, docs don't even think to consider it. it's all Androgenetic Alopecia and TE and when obvious, Alopecia Areata.

    i am kinda thinking i should get a scalp biopsy done. unfortunately, to see the derm here would take like a year. bummer.

    gina...do you have any autoimmune disorders that would make you think it's diffuse Alopecia Areata??
  18. ginawat

    ginawat Guest

  19. Merry

    Merry Guest

    Gina ~ Was it you that said you can't gain weight?

    I'm 5' 6" and weigh 118. While I'm a healthy eater, I eat plenty, including dessert every day! I do not gain weight. My poor husband struggles and my friends hate me!

    Funny thing is too that they try on my toppers and look so good in them!
  20. Blue Bird

    Blue Bird Guest

    Merry. not to change the subject but are you shaved under your topper? Dont remember. Also, how often do you take your topper off and how do you feel about having shaved on top but long hair all around? I think I would feel/look weird..

    Thank you

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