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2013 NAAF Medical Experts Question & Answer Session

Discussion in 'Women's Alopecia Areata' started by Joann, Jul 18, 2013.

  1. Joann

    Joann Moderator

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    Hi Girls,

    I attended the medical question and answer session at this years NAAF conference in St. Louis. The medical panel were: Dr. Wilma Bergfield, Dr. Vera Price, Dr Richard Strick, Dr. Maria Hordinsky, Dr, Madeline Duvic & Dr. Caroline Mann . The questions were submitted in advance by those attending the conference who chose to do so.

    Coincidently there was another conference at the same time for Dermatologists. NAAF extended an invitation to them to join in if they chose to. We did have some in the audience. Everyone clapped when someone got up from the audience and said that not many derms are interested in hairloss. I hope those derms in the audience took note.

    The thing that struck me uppermost about the whole session was that the panel doctors considered experts in the field of alopecia especially Alopecia Areata type alopecia had differing approaches and opinions concerning treatments for Alopecia Areata etc.
    I wasn't the only one who made this observation either. It became quite apparent when a question would be directed to a specific doctor. They would give their answer and then other doctors in the panel would also comment.

    I could see it too when the floor was open to anyone who had further questions. So many inconsistencies in what patients are being told by their individual derms.

    It just strengthens the fact that there are no hard or fast answers for this condition. Our best defense is to arm ourselves with as much information as possible and when we do seek out a derm to at least go to one whose speciality is hairloss.

    The question was brought up about how to find these derms. NAAF has a list of willing and able derms so you can contact them at www.naaf.org. There is also a U.S. based website to use. You can do an advanced search with "hair disorders" as a keyword and you will get a listing of doctors within the mileage range you have put in.

    http://www.aad.org/find-a-derm/


    They did use some of the info from their Patient Registry to answer some of the questions. I believe it was something like 2500 people involved. They really emphasized that more people need to register so they can get better idea of the genes involved & even more information on Alopecia Areata.The Registry gives us the best hope for answers and a cure.



    Does a gluten free organic diet help with Alopecia Areata?

    If you are iron, zinc or Vit D deficient perhaps there will be an impression that correcting the deficiency helps Alopecia Areata. There have been no studies yet. It is important for health overall to have red meat at least once a week. When checking iron levels check ferriten not just serum iron level.

    There are 10% of gluten intolerance patients with Alopecia Areata.


    What percentage do siblings have of developing Alopecia Areata?
    Less than 10% will develop Alopecia Areata. In 100 patients with Alopecia Areata only 20 patients will have multiple family members with Alopecia Areata.


    Who gets Alopecia Areata?
    All ages, all races. It could happen at anytime. I had a patient 87 yrs. old developing Alopecia Areata for the first time.


    Is stress a trigger for Alopecia Areata?
    Maybe yes maybe no. Genes are defintely involved and there is also an environmental factor. 80% of all patients with Alopecia Universalis have the HLA gene . However, it is not all genetics. In 2 identical twins one had Alopecia Areata one did not. The environmental factor is part of the equation.


    How can I find out my trigger for Alopecia Areata?
    There is no way to prove what the trigger was. It serves no purpose to go back.


    What about prednisone or methohydrexate as a treatment for Alopecia Areata?
    They will work to regrow hair. However, the treatment is worse than the disease of Alopecia Areata itself. Health is more important than hair. You can get away with it short term but long term you can get serious side effects. Do no harm is the operative word. There is always hope.

    Have the number of people affected by Alopecia Areata gone up?
    Previously there were 5 million in the USA with Alopecia Areata. Presently there are 6.5 million possibly more.


    Which parent has given Alopecia Areata to their child?
    Both. The HLA components come from both parents. Then by chance Alopecia Areata happened.


    It it more common to also have a thyroid condition if you have Alopecia Areata?
    Thyroid condition is more common in someone with Alopecia Areata. Have your thyroid antibodies checked not just your T3 and T4.

    Can antidepressants cause Alopecia Areata?
    No specific meds cause Alopecia Areata. TE hairloss perhaps.


    Can vellus hair go into terminal hair after 1 year?
    It can but no way of knowing if it will.


    What percentage of people get the more severe forms of AT or Alopecia Universalis?
    5% stay patchy. Very few develop extensive loss like AT or Alopecia Universalis.


    What aren't nutritional studies at the top of the list?
    They should be but there are limited funds to do so so we follow the clues we already have.


    What other autoimmune diseases do you also see with Alopecia Areata?
    Thyroid, asthma, hayfever, diabetes, rheumatoid arthritis, colitis, chrons , celiac disease and MS in family members.


    Does Biotin help with Alopecia Areata?
    No


    Does Latisse regrow eyebrows and eyelashes or even hair?
    Latisse extends the hair growing period. It does need starter hair. If you have no eyebrows or eyelashes at all you will have no success using Latisse. Minoxidil is not as effective . There is a study being done with Latisse. The results will determine if it overtakes Minoxidil as a treatment.


    How many people with Alopecia Areata also have celiac disease?
    In the NAAF registry 10 % of Alopecia Areata patients also had celiac disease.


    Should Alopecia Areata be treated?
    (There was quite a difference of opinion among the panel about this question. Some felt that is loss got extensive best to stop others wanted to push ahead with sensitizers)

    With limited loss of Alopecia Areata less than 50% - cortisone injections work best at regrowing hair

    Extensive loss greater than 50%- Squaric acid or DCP

    Depends too on how long hair has been gone. If you have been Alopecia Universalis longer than 5 years only 20% chance of responding to sensitizers.

    100% hairloss - success rate with sensitizers is 25%

    For hair to continue growing if sucessful on treatment, treatment once a week is essential

    Remember there is "No Cure"

    Sensitizers are not recommended for children


    Hormonal Link with Alopecia Areata?
    Registry will show if hormonal changes affect Alopecia Areata. Need more samples for registry.


    Why is my regrowth white
    ?
    White hair is the last to fall out in Alopecia Areata because it has no melanin. It's very normal for it to regrowth to be white and change colour.


    What is the best way to disguise the "map of the world" on my head?
    Dermablend generally works well


    Medical researchers for NAAF are concentrating on the 8 prs of genes those of us with Alopecia Areata have in common & how they are also common in other autoimmune conditions especially Diabetes. They are also looking to identify a "BAC" gene in Alopecia Areata patients. They need more test subjects through the NAAF patient registry. They feel it will be a breakthrough in the autoimmune community. That's all that was said about it.

    Joann
     
  2. dancer

    dancer Experienced Member

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    Hi Joann

    Thank you for taking the time to share all that info. Pleased you enjoyed your weekend :eek:

    I presume you have to be in the US to register ?
     
  3. Joann

    Joann Moderator

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    Thanks dancer :)

    Unfortunately, there are only 5 registry centres that are all located in the U.S. I'm going to put up a separate message with info about them for our U.S. members who have Alopecia Areata. I did participate in the registry at the 2010 NAAF conference. The people manning the registry desk said I would only need an address in the U.S. to take part so my friend let me use hers. All my bloodwork, examination of my head etc was done onsite at the conference.

    I believe that's the only way you can get around it if you're not in the U.S.
     
  4. starshine

    starshine Guest

    Hi Joann. Thanks so much for sharing. Not a lot new, but some of the responses were interesting. Glad you had a good weekend.
     
  5. dancer

    dancer Experienced Member

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    Thanks Joann, shame I would love to be part of it. Knowing that your case may help to find a cure or prevent others suffering the emotional stress of alopecia would be comforting.

    Currently there is no research in the UK, they do not even know how many people have alopecia as we are listed under dermatology :hmmm:
     

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