Universalis folks, a question:

My son is 11 and developed Universalis over the past 6 months. He has no hair left anywhere save for a random one here and there. How likely in your experience will his hair grow back (knowing it will likely fall out again) with or without treatment of some sort. I want to know if we need to just accept this as the new normal. Thanks!

Views: 610

▶ Reply to This

Replies to This Discussion

Permalink Reply by BLee on October 7, 2014 at 9:22pm
Hi Katie, I have had AU for 26 years. I hate to say negative things but I have never had any regrowth! It's always a dream of mine that it will grow back but hp him be confident with who he is! It's only hair! He's one of Gods beautiful children!!
Permalink Reply by Rose Marie' on October 7, 2014 at 9:55pm

Hi

My experience with my daughter has been variable over the years.  She was diagnosed with alopecia when she was 12...she is now 23 years old.  In that time she has regrown her hair 6 times to varying degrees (without the use of medication or treatments).  I'm afraid everybody is different and nobody can give a definitive prognosis for the future...that's one of the hardest things to come to terms with for all dealing with alopecia.

If I can help in any way feel free to message me.

Rosy

Permalink Reply by Katie on October 7, 2014 at 11:48pm

Thanks all. My son is struggling with accepting this and hoping, believing really that his hair will grow back. He is being treated and there was some progress but its' been slow and now basically stalled. I know this is a process and he is mostly just fine, has gotten into the groove of hats and changing without taking off his hat, and dealing with the people who say things to him but it is still a struggle for him. 

Permalink Reply by cws on October 8, 2014 at 8:11am

I know this is hard. I would start getting the mind set that this is the new normal...for now. Things are progressing in the treatment of this disease. It may be several more years, but that is a lot better than what would have been said 10 yrs ago. I believe there is a light at the end of this tunnel whereas before it was pitch black. 

At that age your son is developing with all kinds of changes about to take place in his body over the next several years. It is quite possible that these changes help reverse this. Like the previous poster said, "the only thing predictable about alopecia is that it's unpredictable".

Permalink Reply by Dom on October 8, 2014 at 11:46am

If he had AA. The prognosis from me would be favourable. I had AA four times and it grew back and stayed for years.

When i went AU, i thought/knew that this was the "endgame". In 10 years i have had a few hairs here and there. This year my hair has grown in patches on my head/face/arms. What a surprise. I even bought a razor to keep the stubble down.

My opinion is that i have rarely seen a person on a forum grow ALL their back with AU. I have been reading posts for 10 years. Most like me are AU for years/decades.

I 'm not a pessimist lol but thats why forums exist. If you are AU.  Start the learning >

Regarding treatments for AU. I have never seen anything credible in 10 years.

There are none, none , none, none........

My tip for your son is get his eyebrows tattooed......like mine. Feels and looks good.

Permalink Reply by BLee on October 9, 2014 at 8:18am
I agree Dom, I have had AU for 26 years and no regrowth! I have eyebrows tattooed too and I love them!
Permalink Reply by Graham on October 8, 2014 at 12:07pm

Hi Katie, I developed AU about 2 years ago and it took about 5 months to lose everything. In the last 3 or 4 weeks I have noticed regrowth on my head and elsewhere. I think its a case by case thing though, even though I have heard that 2 years is a bit of a populär time to start getting it back, if its going to come back that is. I hope your son is coping well with it.

BR

Graham

Permalink Reply by marisa on October 8, 2014 at 9:37pm
Hi katie, my son is 3 years old and has AU.. he began with spots in sept 2013 and lost all his hair by november...he then lost his eyelashes and eyebrows in feb 2014. We recently started a squaric acid treatment and in 3 months he has regrown hair. We just began his 4th month of treatment and hope it continues.
Permalink Reply by BLee on October 9, 2014 at 8:20am
Hope it works! So young!
Permalink Reply by George on October 9, 2014 at 8:59pm

I got AA when I was about 12, AU by the time I was 17.  No growth since, except an odd follicle here and there.  I'm 44 now.  In the first few years, had Topsyn, Haalog and DNCB treatments, but they didn't help much, and DNCB really itched.

Permalink Reply by marisa on October 9, 2014 at 9:56pm
Katie, I wanted to share 2 pics of my son, the first one is from sept 1 and the 2nd one is from oct 9, hopefully you can view them. There are treatment options however not every treatment woeks for everyone, but it doesnt hurt to try or you will never know if it could have worked.
Attachments:
Permalink Reply by BLee on October 13, 2014 at 6:23pm
Wow that's awesome! He's so young! Hope this works for him! Does he have eyebrows and lashes?

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service