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NAAF Conference- Medical Questions & Answers

Discussion in 'Women's Alopecia Areata' started by Joann, Jul 10, 2006.

  1. Joann

    Joann Moderator

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    Hi Girls, :D

    Lin, a friend of mine from the AASC took notes at the medical question & answer session at the NAAF conference. She was so kind to post all her info on the AASC and gave me her permission to post it here on Her alopecia as well. All her hard work is much appreciated. Thanks Lin. Here goes:


    I attended a medical question and answer session presented by 4 doctors and researchers. Members were invited to put their questions in.

    Q What are the medical implications of loss of nasal hair?
    A There is no increase in infections or sinus infections

    Q. What connection is there between illness followed by alopecia?
    A. Alopecia can occur after illness particularly in children. In a child who has a tendency to alopecia hair can start to fall out again after an illness. Which explains the pattern of growth then loss seen with children.

    Q. Is lack of iron associated with alopecia?
    A. Low iron levels doesn't cause Alopecia Areata. But it is recommended the person should be in the normal range, (they said 30-40 was the normal range). Correcting iron in the blood won't affect Alopecia Areata although if the person does have low iron levels its useful to find out why, causes can be absorption.

    Q Is a Celiac condition and Alopecia Areata related?
    A It might be but the link isn't proved yet although going on a gluten free diet won't cure alopecia.

    Q Is there a slightly higher risk of thyroid problems if you have Alopecia Areata?
    A Families with alopecia tend to suffer a greater level of other auto-immune disease such as thyroid problems.

    Q How long should you try a treatment before deciding it doesn't work?
    A Treatment should be tried for 4 months before deciding it doesn't work.

    Q What part of the hair follicle is targeted in Alopecia Areata?
    A It's the the pigment cell (I think they called it the melanocite) in the hair which is targeted. Perhaps this explains why is often grows back white. Sometimes the melanocite in the skin is targeted as in cases of vitiligo. Grey hair is not targeted so if a person loses their hair in later life often the grey hair remains.

    Q What are the statistics of someone with alopecia passing it onto their children?
    A Alopecia areata 10% or less, very rare and both parents would have to have a genetic marker for auto-immune diseases.

    Q What's the statistics of multi numbers in one family?
    A 90% of members in family WILL NOT have the disease.

    Other statistics concerning the above two statistics:-
    There is a higher chance of AT if the person is under 30 when affected
    If they are affected under 30 there is a greater chance other members will be affected
    For people affected for the first time over 30 they are likely to only suffer from a mild form and be the only person in their family affected

    Q Is folliculitis associated with Alopecia Areata ?
    A Folliculitis often occurs during hair loss but is not the cause of hair loss.

    Q On treatments (Unfortunately I didn't get all the treatments they mentioned, I must have nodded off, this is what I got)

    Steroids -
    Third do well on sterords, third don't respond at all, third get hair but don't keep it
    The treatment will not turn the auto-immune system off. Its only worth treating as long as the treatment is working.
    There are side effects associated with steroids especially with children (it can stunt their growth) and the percentage of people who respond to treatment is not as high as doctors would like
    Long term use can cause major side effects



    DPCP and Squaric acid
    This drug causes an allergic reaction and severe eczcema which can cause hair regrowth
    90% will become allergic and 50% will regrow their hair. Obviously out of these 50% a number will lose it afterwards
    Squaric acid takes longer to work
    These are uncomfortable treatments, the doctors said too nasty for children under 15
    (To think Ariane was offered this aged 12, thank goodness we turned it down)

    Q Whats the effectiveness of Sulfasalazine?
    A It doesn't work.

    Q Whats the effectiveness of hair machines and laser combs?
    A Doesn't work.

    Q Do tobacco and illegal drugs induce or cure Alopecia Areata ?
    A No.

    Q Are eczema and hayfever related to alopecia areata?
    A These are the most common relations to alopecia NAAF has started a partnership between eczema research. 40% of alopecia sufferers have members with allergies in their family.

    Q Is stress a factor?
    A Stress can induce changes in cortizone levels and the immune system. Which can then lead to alopecia but the connection is not proved yet. Plus this is major stress like an accident, an illness, a death in the family of a close member not the day to day stress that everyone experiences.

    Q Is there a link between vaccines and alopecia?
    A There is no definite link as yet although there was a couple of twins in their study who developed alopecia after an inoculation. They haven't found any other people in their studies. But they advised to have any inoculation as some of the infections they prevent are much more dangerous than Alopecia Areata.

    Q Why do virus trigger hair loss?
    A The lymph nodes can enlarge during an illness and in genetic individuals this can continue on to trigger hairloss.

    Q What triggers are there for hair loss?
    A You would need a genetic predisposition - (genetic background with auto immune conditions in the family) then a trigger which can be any of the following
    virus - immune reaction
    stress - immune reaction
    drugs, hormonal, surgery


    Q What are the chances of stem cell possibilities?
    This is still very much in the early stages of research

    One of the doctors said that if the hair follicles had been severely damaged it might not be possible to grow hair back even with stem cell possibilities, the other doctor disagreed and said that under the right conditions they would respond. The first doctor agreed it was possible for regrowth but they would be slower to respond, that’s why when they did drug tests they tended to do it on cases of Alopecia Areata as they responded quicker and better than AT and Alopecia Universalis. One mother in the room asked whether her doctor was right in giving steroid treatment to her child every so often otherwise the doctor said it would be impossible to wake the hair follicles, even though each time the child had steroid treatment it only lost his hair again. The doctors didn't feel this was necessary and it would respond if an effective treatment appeared even if the hair follicles had been asleep for years.

    One of the doctors said there was a cure for Alopecia Areata but it was too dangerous to use it. She said if it was possible to do bone marrow transplant the patient would regrow their hair. But there was a 20% chance of dying during the operation and 80% chance of grafia host disease which would attack the skin. They reminded us that people with alopecia were healthy and it wasn't worth taking these risks with some of the treatments.

    Q How long can you go without hair growth before it never comes back?
    A It can always grow back

    Q Whats the benefits of holistic and herbal treatments?
    A Holistic treatments can relieve some of the stress experienced with alopecia but there is no evidence to show it regrows hair. Some herbal treatments especially Chinese treatments can contain steroids. For that reason there might be some hair growth BUT as the user and the doctors don't know what they contain there should be caution in using them. For instance if someone has hypo thyroid and is receiving a prescription drug to treat their thyroid complaint, then goes on to use a herbal/chinese treatment which also contains the same steroid, they might end up overdosing their body and making themselves ill as a result

    Q What conditions can cause alopecia ?
    A. Vitamin D (I can't remember if its too much or too less) causes hair loss
    Biotin deficiency causes hair loss
    High mercury poisoning causes hair loss
    Conditions like Lupus

    Q Is there a blood test to tell you have Alopecia Areata?
    A There is no blood test to tell you have Alopecia Areata. Usually it is diagnosed by physical symptoms and history. Occasionally if there is doubt it is diagnosed by physical, history and a biopsy.

    Q Can puberty cause regrowth?
    A Puberty can cause regrowth.

    Q What causes damaged nails?
    A Pitting or other nail problems is where the nail matrix is targeted. The nail matrix is the underneath the skin, at the base of the fingernail where the new nail starts to grow.

    Q Is there any treatment for nails?
    A There is no real treatment but topical treatments or thinning can improve the appearance.

    Q Is there a twin study?
    A They are doing studies of identical twins and are eager to collect more twins for their study.
     
  2. at_a_loss

    at_a_loss Guest

    Joann ~

    I can't thank you and Lin enough for this... I wish I could have gone myself... some of the questions that I have had for YEARS have now been answered... specifically iron levels and the chance of my becoming AT or Alopecia Universalis later in life... I can always cross my fingers and hope that whatever regrowth I have will stay but I've pretty much resigned myself to believe that within the next few years I will be Alopecia Universalis (just being realistic).

    Thank you soooo much! If you were here right now, I would give you a big ole smoocher! :shock:
     
  3. Joann

    Joann Moderator

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    You're very welcome(((( Melanie)))) I will thank Lin for you too. She came from the U.K. and still had jet lag when she attended this session so I appreciate her efforts even more under these circumstances.

    You just never know what the final outcome of each case of Alopecia Areata will be. Sometimes when you think the worst it never happens so it is best to take it a day at a time. Not easy I know. :roll:

    Take care. Hugs. Joann
     
  4. redclaire

    redclaire Guest

    It's crazy how some of the Alopecia Areata hair loss issues and the thyroid issues seem the same.
    There have been times I read the Alopecia Areata hair stories and think " gee... well that's familiar".
    For instance: nail pitting
    and my regrowth. My regrowth starts out very pale but seems to be getting thicker and darker towards the root.
     
  5. Joann

    Joann Moderator

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    Claire, I have both Alopecia Areata and am hypothyroid. I am suprised too at the similarities. There are even similarities between my third autoimmune condition (Sjogren's Syndrome) and Alopecia Areata & thyroid . I belong to a support group for it as well and of the 50 or so people I have most have the fatigue & some have hairloss too.

    I think if a cure could be found for even one of these autoimmune conditions cures for all would soon follow.

    Take care. Hugs. Joann
     

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