Hi All,

My baby girl was 11 months when she lost all of her her within a couple of weeks, then two months later eyebrows and eyelashes. She is 20 months now and she has white little fuzz hair and white eyelashes and eyebrows. We have another appointment with pediatrician dermatologist in January, till then I would love to connect with parents who have same problem and I hope to find out more stories. 

All the best to everyone!

Views: 249

Comment by Ericka on October 23, 2020 at 3:08pm

Proud of that little champ. Let her keep going strong. All the best to the both of you.

Comment by Maggie on October 23, 2020 at 3:24pm

Thanks Ericka! 

Comment by StephaniePA-C on November 10, 2020 at 6:59pm

Hi Maggie. 

Ugg....we too were diagnosed young, 12 months old. My daughter is 8 now. At our worst we were 40% hair loss. She then went into remission for 3 years! I was convinced we had beat it with diet eliminations and vitamins. Then the rug was pulled out from under us when I tried to get her caught up on immunizations at age 5. We have had patches ever since. I guess if I could look back at us at 12 months old when we found out what was happening, I would say....take a breath Steph! It's going to be okay. And it is. I was devastated with her diagnosis. I felt helpless. I was convinced my daughter would live a life of misery and isolation. But none of that is true. Do I wish we didn't have to deal with this? You bet! Do I wish I could quit worrying about it? You bet! But at the end of the day our daughter is healthy, beautiful, smart and full of life. She's popular and has a great group of friends. Hang in there momma. It's going to be okay. 

Comment by Rhonda Kelley on November 10, 2020 at 7:23pm

We have raised our granddaughter who is now 19. She was about a year old when she was diagnosed. It’s been a long journey so I’m not going to write you a book. If you have any question about what it has been like, just let me know.  I’m happy to share our experiences. This is a great place to go to for support. 

Comment by Superduper on November 13, 2020 at 4:51pm

My daughter lost all her hair at 18 after her MenACWY booster right before leaving for college. While she does have some sporadic regrowth, she has lost 95% of all her hair including eyebrows and lashes. She is doing great in school and enjoys a very full life. We tried lots of treatments and saw the leading researchers at Yale and Columbia Presbyterian to look at some of the newest treatments. Since she decided to pass on the xeljanz, there are not too many other options out there, but lots of research toward T cell modifications that are on the horizon. I have learned a lot through this ordeal (including acceptance), but your daughter will most likely end up amazing you with her resilience! Somehow things have turned out better than I could have ever imagined when it started. :-) 

Comment by Joe Nyagah on December 6, 2020 at 9:56pm

Omg, this illness touched our family too. My daughter now is 16 and she was 1 year old, she was diagnosed with alopecia universalis. She lost a lot of hair and it was hard for me to see her like that. Thank God, we passed through all this and now she is safe. Our doctor said it will be better for us to feed her with kendamil organic stage 1 milk for babies https://anyorganics.com/kendamil-organic/209-kendamil-organic-first...after the treatment. I hope there are less mothers who know this pain.

Comment by Cheryl, Co-founder on January 27, 2021 at 11:42pm

Hi Maggie,

Have you joined this group on Alopecia World?


Comment by Cindy (Duncan's Mom) on January 28, 2021 at 11:37am

Maggie - my little guy (not so little any more) was about 18 months old.  It fell out 2 weeks after vaccines.   I remember the feeling of hopelessness and wanting to “fix” it.   Thad what moms do right?   I want to share an experience that helped me with my perspective... I was in the airport watching this little boy play in the floor.  He was about Duncan’s age.  He had beautiful curly, thick hair and gorgeous long eye lashes.  I felt sadness and envy that my baby boy didn’t have what he had.  That’s when he moved and his pants legs came up — he had prosthetic legs!  The Lord opened my eyes that day.   My boy is healthy and whole.  We can deal with hair loss.  Now I know it has to be different for a little girl.  So I’m not minimizing that at all.   It’s not been easy for my guy.  He’s now 16 and a smart, strong young man.  My advice is to educate yourself as much as possible.   There’s new therapies being developed.  Also educate on ways to help your daughter be an over comer!   Help her know she’s beautifully and wonderfully made.   It’s so tough being a mom with everything seemingly ok but God will provide you the strength and the wisdom.  Praying for all you moms out there!   

Comment by Alopecia and the Cure on January 28, 2021 at 12:42pm
Hello Maggie,
I am the mother of a 24 year daughter who was diagnosed with Alopecia Totalis at the age of 12. I have spent years studying the effects of Alopecia and have created a lifestyle which will help you regain your hair back. Please read my true story about how we cured Alopecia treatment free. Alopecia and the Cure, Janis and Jonathan Card. Find us at Amazon.com. Books
Comment by raffaella saccardo on February 14, 2021 at 6:01am

I hope you will understand my english. I'm Italian. Here doctors don't believe that a possible cause of alopecia could be the streptococco A. Since many years the tonsillectomy is not more adopt to solve the problem of streptococco A; but in Croatia, for example, has been considered the first cause of alopecia among the children.

It is just a suggestion to control if the streptococco A is working in the children with Alopecia. But pay attention: it is necessary to control if it is inserted in the immunitary system. Here in Italy the blood exam is Streptozyme. I don't know if it is the same exam's name in U.S.A. 


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