I've never met anyone with Alopecia, so I guess I'm making this topic to get some of this off my chest and discuss some of the treatments I tried. If anyone cares to read...
In Grade 2 at the age of 6 or 7, I was diagnosed with AA. It started as 1 spot the size of a coin, which my family doctor said wouldn't get any worse. Skip ahead a few months, it got a lot worse with new coin-sized spots appearing. I was given many different kinds of creams before being reffered to a dermatologist in Ottawa, Canada. Well to see a specialist here, it takes months.
By this time, it had gotten pretty bad. I only had a small stripe of hair left on my head. I would shave my head to blend in, but never shaved it entirely so it was always noticable and looked funny. The kids were pretty cruel about it. I had my way of dealing with them though. I'd tell them it was contagious and I will pass it to them if they keep bothering me. Worked every time.
So the specialist in Ottawa decided to treat me with Cortisone shots in the scalp, every 2 weeks. I must have been in Grade 3 by this time. We did the treatment for a long time, and eventually it worked! All my hair regrew. This was all great for a year until suddenly, it came back worse than ever before. I lost all the hair on my scalp. We continued treatment for another year or so with no success.
This is when he switched my treatments to diphenylcyclopropenone, which was applied topically to my scalp and could be done by my parents at home. He worked my tolerance up to 2% strength. The side effects were aweful. Blistering, bubbling, extreme pain.. One time after playing outside, I sweated it down to my face and neck and it was absolute agony, my entire face was blistered and bubbling with puss. But it seemed to be working alright. I wasn't having the best success but I would get some regrowth which we attributed to the treatment. Despite it working some, I always hated it. It made my scalp spots more noticeable due to the blistering.
This is the treatment I stook with the longest. He didn't have any other alternative treatments for me, and I never trusted other people's unscientific remedys. If it wasn't good enough for the doctor, I didn't want to try, because he knew more than anyone else.
By this time, I must have been grade 6-8. This is when kids got _really_ cruel. It wasn't an issue of 1 bully. It was the entire school against me. I was bruised from top to bottom from the daily ass-kickings.
Luckily for me, I was one of the most athletic kids of the bunch. This is honestly what saved me from bad times, and through sports was the only time I was shown some respect, everyone wanted me on their team and I was always included in their activity's. This is why I suggest anyone who has kids with alopecia, try to get them interested in sports as they might enjoy them a lot. You'll find the most popular kids in school are those who do the best at sports. This is probably just a correlation, but it tends to be true.
So over the next years, I had mild success with the diphenylcyclopropenone treatment. It would grow in. It would fall back out. It would grow in. Back out.. The side effects got better, but it always did make my scalp burn.
I was in highschool and I wore a hat. Rumours would go around that I have cancer, or leprosy, or other stupid things but people didn't beat me up anymore. I made the BEST choice of my life here. I took off my hat. I stopped all treatment (since I wasn't even sure it was working). I decided "whatever happens, happens" I didn't care that the girls thought I was ugly, I didn't care that I was the joke of the school. I was interested in science and learning about the world, not what other people think about me. This was the end of Grade 11.
Oddly enough, all my hair came back and thicker than ever. I still attribute it to my new way of thinking and lack of damaging treatment (seriously, fuck diphenylcyclopropenone and cortisone). I started Grade 12 with a full head of hair, and graduated highschool with a full head of hair at age 17.
It was success until I turned 21. I lost the thirds of my eyebrows. This was devestating to me as it had been years! and I never lost anything but my scalp hair in my life. I got it checked by the doc, he said it wasn't a thyroid problem. They suggested cortisone shots again.
Nope! Forget that! I remembered what I told myself. The brows came back by themselves within 6 months. Now I am 23 and havent lost any hair since highschool minus the eyebrow incident.
I do think I have beat this alopecia finally. I will never say that for sure, as it tends to throw you some curve balls.
I poorly contructed my story in a rush, so thank you for reading. Deepest respect to all of you as I know many must have had it worse than me. There is always hope!
Thanks for sharing. :)
I'm sorry for how you were treated in school, I'm glad to hear that you found your way though, I can only imagine how tough it was for you. I think attitude plays an important role even if someone loses their hair again, or it never comes back because many with great attitudes still may not get their hair back, but it's not their fault, I'm working on having a good attitude myself, it never goes out of style. I am happy that you ditched the treatments, sadly AA,AT,AU can come and go with or without treatments, I agree with you and have done very little treatments myself, but I was an adult when I got it, and being young is much more difficult. It sounds like you are doing very well now...I hope that you never lose it again, I believe in success stories. Thank you for sharing you thoughts and experiences with us.
Thank you for your story! I was recently diagnosed with AA, and although I still have (mostly) a full head of hair, I've been experiencing pretty significant hair loss since August. I've agonized over it for months now, trying everything on the internet to make it stop falling out. I find myself going through cycles of acceptance, and then depression over the idea of losing all my hair, but I have noticed that my hair loss is less when I stop stressing over it. I know I shouldn't let it bother me, and the fact that it gets better when I stop thinking about it should keep the negative thoughts at bay, but the "What if I lose all my hair?" thought it always in the back of my head. This gives me so much hope, and encourages me to think more positively. Thank you again for sharing!
Thank you jj for this, as I think I am at this point now. I have done the steroid lotions and injections but the dcp stuff scares me. I asked my doctor for a prednisone prescription but have decided to try chinese medicine for now. I have diffuse alopecia areata and am losing hair everywhere. I am just using minoxidil for now on scalp and eyebrows. My relatives have told me to put my mind somewhere else and to stop treatments as well and see how it goes. It is so hard to do but reading your story gives me hope. I am happy you are doing well. And Allbutone I have exactly the same thoughts as you.
thank you for sharing its very important your force of character I m very happy for this result