Replies to This Discussion

Permalink Reply by Alo-mom on April 5, 2017 at 7:26pm

As the mother of a daughter who developed Alopecia Universalis I totally understand your feelings. It has actually taken years to accept her condition. Please read my post on my trip to China to find the best factory to construct my daughters wigs. Since I could not control her hair loss I found a way to control what human hair wigs she would wear. Now that being said, have a son with hairless is a bit different. I suggest you contact the National Alopecia Areata Foundation in San Rafael California. They are a very good resource for you and your son. They are having a conference in Miami in June if you are interested. This condition is autoimmune where your where your immune  system turns on the hair follicle. The follicle in many cases does not lose it ability to grow hair but your system thinks hair is bad and therefore there is inflammation which attacks the hair follicle. If we can find a way to slow that inflammation down then the hair will return. I truly feel for you and if you want to contact me you can friend me. Check to see if there is a support group in you area. It does get better with time, but this a only the beginning and you have remain strong for your son. If he sees you getting emotional it could damage him and now is the time to think about him. Call or write and I will be there for you, 

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Permalink Reply by Mia on April 6, 2017 at 4:49pm

How quickly did it progress?  Did he go straight to AE from AA?

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Permalink Reply by Alo-mom on April 6, 2017 at 5:06pm

Unfortunately she lost her hair in 4 months. It was very hard on me. After finding her good wigs life slowly returned to normal. As she lost her lashes and brows it went down hill , but with great cosmetics and natural looking lashes all was good again.

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Permalink Reply by Maggie on October 18, 2020 at 4:05am

Hi, 

I just join in the website and I’m trying to connect with other parents who child have AU. I can see your post is from 2017. How is your son now? 

Thanks 

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Permalink Reply by Marie on October 19, 2020 at 7:55am

Hi Maggie - 

i am a parent of a daughter who is now 30 but has had some form of AA since she was 3 years old.  She is now AU and has been for at least 15 years.  We have been through all age groups to 30 and have lots of experiences to draw upon.  If there is any support I can provide I’d be happy to!

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Permalink Reply by Maggie on October 19, 2020 at 8:59pm

Hi,

thank you you for reaching out to me. I’m sorry to hear about your daughter. How is she doing? Did she ever had a period of time when she had her hair? Did she try any medication? Does she have any other underlying problems? Does she wear a wig and make up? And more importantly, is she happy? 

I have lots of questions and I don’t know anyone who had similar experiences so I hope you would mind me taking your time. 

My daughter was 11 months old when we moved back from Europe to New Zealand. I have noticed one bald spot couple of months before, but I had no idea what is this indication of.

At 11 months she lost all of her hair within a week and then two months later eyelashes and eyebrows. Before lost eyebrows and eyelashes the general dermatologist said that it’s more likely to be Telogen effluvium as she has been sick few months before. Before she lost eyebrows and eyelashes she has been to hospital with difficulty of breathing due to viral infections. 

After she lost eyebrows and eyelashes we went to see dermatologist again and he said it Alopetia Universalis. At this point she had white peach fuzz and white eyebrows and eyelashes, and the peach fuzz on her head seems to keep growing. We have an appointment with paediatric dermatologist in January so we will find out more and maybe the doctor will recommend some blood test. Otherwise she is happy and healthy girl.

My question at this point would be what does the peach fuzz head on head and white eyelashes and eyebrows mean? That the hair is going to grow back with the right colour eventually? Or it can stay like that for years? 

Mother question is do you know anybody who had AU and recovered? Could it be one time hair loss? More like juvenile autoimmune disorder that happens only in childhood? My son had Iga deficiency and juvenile parotitis ( swollen parotid glands) when he was little. It all went away when he was 5-6 and he is healthy 9 years old now. 

I would appreciate your help with sharing your story and your experience. 

Thank you you and hope to hear from you soon. 

Maggie 

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Permalink Reply by Marie on October 20, 2020 at 10:59pm

Hi Maggie,

My heart goes out to you as I understand how unsettling a time this can be.  I will try my best to answer your questions. 

My daughters journey with AA began when she was about 3.  The trigger I believe was an allergic reaction to something and within a month her hair began falling out.  We were also initially given the diagnosis of Telogen Effiuvium and then even more scary a pediatrician suggested she had lupus.  When we finally were able to see a dermatologist he assured us it was Alopecia Areata.  Jessica also had blood work done and she did have a slightly elevated ANA (found in autoimmune conditions) which again after ruling everything else out was attributed to her AA.   She also was greatly affected by eczema, allergies and now asthma which are often found with people who have AA.

Her hair fell out twice and grew back before finally progressing to AU.  She has been AU now for about 15 years.  Her eyelashes grew back last year without any treatment which was a big deal for her. We initially tried the treatments available such as topical steroids and shots. It seems as though her hair initially responded to the topical steroids but with time stopped although its hard with AA, the hair follicles are not dead and can always regrow so I didn't really know if it was spontaneous regrowth or the meds. 

This is an exciting time for AA research/hope. There are breakthrough treatments that are just around the corner.  None of these types of things existed when my daughter was younger.   I truly believe that your daughter will not have the same challenges my daughter has due to medical advances.

The white peach fuzz on your daughters head means some hair is responding and for most it normally returns to it normal color.  I feel this is a good sign and hopefully it will continue.  Some have said this was the first sign their hair was growing back.

Through my involvement in seeking and giving support I have interacted with many Alopecians.  There are many who have regrown their hair and remain that way. The hair folicules are alive and regrowth is always possible.   I have even heard of a couple who were previously AU.  AU can be more challenging but it is always possible and some have.  

To answer some of your other questions.  When my daughters hair loss reached a certain point she was provided a hair piece through Locks of Love.  They are a wonderful organization.  If you google them you can read about this type of hair piece.  The type of hair pieces she had (and still has) is a human hair and the base vacuum seals to her head so she was able to do cartwheels, swim etc.  No one ever realized she was wearing a hair piece, I will talk more about this in another paragraph.  She still wears this type of piece as an adult.  When she was older we had professional cosmetic tattooing for eyebrow's done.  They are beautiful and no one can tell they are not "real".  Eyelashes have been more challenging.  She has always found it difficult to get "fake" eyelashes to stay on.  

I will close with letting you know that YES she is a very happy and successful person. She has wonderful friends and been in relationships where she was loved and valued.  She has however been affected by AA so I want to be honest with you in what I wish I would have done differently to help her.

When she was in elementary school she began getting teased during one of the periods of hair loss.  It was difficult for her and I tried to do all the things I knew to do.  Talk to parents, gave a presentation to the class, took her to the NAAF conferences etc.  But inside I was panicking and trying to protect her from the unkindness she felt at times from other children.  At some point, while I was trying to cover patches, fixing her hair so spots wouldn't show etc and protect her from being teased I gave her the message this was something she had to hide.  I wish I would have equipped her to better to deal with the unkindness she felt at times instead of trying to save her from getting teased.  This continues to be the biggest problem she has and it truthfully is a hard one.  She is afraid people will find out she is wearing a hair piece, that she has AU etc and it can affect her interactions with others.   When her and I have talked and I have expressed my regret she says shes not sure which would have been better that looking more "normal" with the hair pieces keep her from more damaging teasing.   I think this is all very individualized and I'm not sure that was better.   I have meet confident/beautiful young ladies who are at peace with being bald and do not wear hair pieces and I often wish I could rewind the clock and figure out a way to give that to my daughter.  So my advise would be if this journey continues for your family find the right balance but mostly always help to instill how this is nothing that needs to be hide from the world.  

Please feel free to ask an follow up questions if you have any.   I want to express again that I know how hard this is.  Your daughter will still have all those things you dream/want for her.   As I stated above my daughter is a happy and successful young women who yes has some struggles but has so many wonderful parts to her life.   - Marie

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Permalink Reply by Maggie on October 23, 2020 at 5:51am

Hi Marie,

Thank you you so much for sharing with me your family journey. This is all very helpful. It must be so exciting to have eyelashes back. There are so many challenges and not knowing what the future holds it’s extremely difficult, living in hope. 

Meantime I’m going to take the peach fuzz and white eyelashes and eyebrows as a good sign and I wish you all the best. Hope to stay in touch with you. If there is any story of a baby with AU that you will come across, please share with me. 

Talk soon,

Maggie 

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