Comment by Nat on August 6, 2024 at 6:02am

Hi Swillard,

I admire people like you!!!!

I couldn't live bald. 6 years with AU and five of them on JAKs.

Comment by 75franklin on August 6, 2024 at 9:56am

I refuse to accept this, and will fight to regain what was taken from me.

Xeljanz and Oluimant have been working for me.

 - never give up, never surrender 

Comment by dreamscometrue on August 6, 2024 at 4:32pm

I've been living with AU for almost 40 yrs now.  It doesn't get easier but I manage to cope with it.  I wont ever give the hope for a cure, ever. I've seen a few studies that seemed to be passed over that include anti-biotics and an anti-acid like omeprazole that have cured people of Alopecia of all types with no reoccurrences, and no prolonged medication, just a one time protocol and done. No one seems to look at those, but I am.  I did try the protocol but I didn't stay on it long enough, but I am going to try again in a month or 2. 

In my opinion, pharmaceuticals have no hope in a cure because then they lost a patient. Coping and dealing is one thing and this does change your life from the inside as well as outside.  Wearing makeup and wigs became my norm but I am sick of that too. I want my life back and I will continue to research and fight for that, its worth it to me.

Comment by Frankinlombard on August 8, 2024 at 5:37pm

Hey Steve....

I appreciated reading your post. I am 58 and have had AU since I was 5. Its interesting to me that I share your sentiments about the situation.

I haven't been to see a doctor about my "condition" since I was maybe 20? I was in a Minoxidil study in the late 80's that didn't really work out for me as I only had partial regrowth. To be honest I was in the study for so long I just lost interest. I did both the topical study and the pills and did not regain full growth. I did read about the JAKs meds, but the side affects at my age seemed a little more than I am willing to risk.

Coping for this long has been a process. When I was younger I obsessed about being "found out". Age has kind of beat that out of me, although I do wear a wig.  Which I absolutely hate. I do wish I could just once have a beard. Even eyebrows would be nice LOL. Problem for me is that I have been wearing wigs for about 45 years. Very few people have ever seen me without one, so I am hesitant about just going with a nude head in public after so long. But I know that I am going to have to deal with the issue sooner than later. No one is going to believe a 60 year old man with a full head of hair LOL. I guess it will just be a part of the process of coping. AU is just the gift that keeps on giving I guess.

I appreciated your post. Thanks for sharing and giving me the chance to share some thoughts too.

Frank

Comment by Craig A. on August 22, 2024 at 4:01pm

I haven't checked Alopecia World in a long time.  It has been 40 years with AA, and 14 with AU.  You can read my blogs if you want but our feelings about AU are pretty similar.  My son was 7 and he watched me shave 14 years ago, I showed my then 2 year old daughter my new look as I took off the hat.  She politely put it back on my head real fast and ran away. 

100% for men looks more normal at first glance than the a 50-75 patchy situation.  I do get double takes at my hairless face to this day.  I have fading cosmetic tattoos for my eyebrows that kind of put the illusion of eyebrows there.  I love the outdoors, but sweat getting in my eyes is very painful.  All of that considered and I can say I am very well adjusted to being AU.  I do get excited when I feel hair on my face and I think something cool is about to happen, but it never goes far.   Instead of haircuts every 6 weeks, I get a new Phillies or Eagles hat or sweatband.  

I followed the prescription trials for over 10 years and we finally have a medicine for kids and adults.  Unfortunately, at 50+ and 10+ years of AU, this risk is not worth the reward.  I hope it is working for others.    

Comment