I was born with my disease Alopecia Universalis a hairloss disease that removes every hair from the body, causing complete permanent baldness, through the grace of God himself I somehow survived my declining spiral to oblivion. The main reason for it was due to the fact that I was three months premature, as I've said without God I wouldn't be here especially after my family prayed and prayed desperately for my survival, their prayers were answered and the doctors were stupefied of my miracle survival beyond the medical capabilities of the late 90s.

I needed something to fight death and my disease boosts my immune system to fight off hair follicles so that explains why I was able to survive on a medical note, also the disease isn't run in my family so, it was gift from the Almighty himself though soon I knew true pain and suffering for my journey to survive through my life. My hair initially fell out at the age of two when my mother went to brush my hair, it frittered away until nothing was left soon after.

Later on in life, this caused much pain and misunderstanding of the world around me and those who interacted with me negatively. I was scared of what had become of me, confused of why I was cursed with this disease and broken when I endured intense bullying and name calls which shattered how I viewed people for a very very long time. I prayed to God that whoever has this life altering rare disease copes with it better than I have.

After a while people began to ask me questions pertaining to my appearance, some have asked the typical questions. "Why are you bald?" "Do you have cancer?" "Did you shave your hair?" I refrained from giving them the name of the condition because it wouldn't matter, they wouldn't know what it was so I dumbed it down to a simple. "A major hair loss disease that's permanent." I wished someone had asked questions like how does it make you feel to be different from everyone else? Or does being bald affect you in the public? Questions like those that would open up doors for me to release how I've dealt with this or what I've been feeling for so long.

This carried on until the end of High School. I had so much grief when trying to grow accustomed to being different physically and socially, times of the dark brought me miserable tears and absolutely terrifying levels of depression, at times I wanted to surrender and just give up. I would've never guessed being so physically different could result in SO much negativity, really surprising. As a result of the pain and misinterpretations I closed off from people in general, shunned myself away into the blackness. I bottle up my emotions and my feelings about how I feel about things, and it's difficult at the same time when I want to vent and tell others how I feel, but I just can't bring myself to do it.

I don't damn those who harmed me verbally or physically, for I completely had no idea why they would attempt to bring despair upon another human being. I withstood all of it and tried to gain a higher understanding, never retaliated because I knew they were taunting and mocking me for a reason, just wasn't completely keen on the exact cause of the discrimination upon me. The best thing they received was a cold icy stare from my eyes, they were emotionless years ago, people had a difficult time reading my emotions, called me hollow. But there were few who saw pain, sadness and even tears though I never desired the need to cry. I was numb to the majority mistreatment so it blocked away what I was truly feeling which in terms...resulted in my emotion cap.

As to how I manage it? I don't, I refused wigs, ridiculous products for hair growth and anything like that. I just accept my appearance as it is. I'm absolutely sure God wanted me to accept it because its a gift in itself from him so it would be wrong to tamper with my appearance or reject it, it would be the same as rejecting an early Christmas gift just because you didn't like it and I know by far that would hurt.

I have no clue how to really sum up everything but for the latter. When I last visited the doctor's in regard to my condition which was three years ago. He asked me whether I accepted the condition as it was or not considering there's no known cure for it. I overtime began to accept the results of the condition and see it was it was. Nothing can be done about it, I'm cursed to live with it forever so I told him. "Yes I accepted it." He applauded me, gave me a compliment saying the bald look suits me lol. I didn't really believe that but maybe he's right? Who knows.

Though I wonder to this day why I was spared when so many have died premature. I was born into the world on death's bed, even with the transfusions I wouldnt've survived. It was the grace and mercy of God that I was able to survive today. I wonder what purpose he had set for me.

Perhaps show people my disease doesn't make me any different from any other human being, race included. I can still care for people even after being shunned and ridiculed, that unconditional love will exist within me, that I can accept myself and have belief in God because of my survival and that the entire time he was holding my hand and I was holding his, just didn't completely realize the bond of suffering and salvation, we had until recent reflections of my dreary days, that anything is possible if you so have a grain of faith.

This is my story. Thank you for taking a leap into my past. I hope those who read this learned something. I sure have and it's brought me great strength and perspective about my life and the path of others who couldn't see where I came from.

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Thank you for sharing your story.

You're welcome :)

Hello Lushiro, you have very eloqently expressed your lifestory for us all to draw inspiration from. It is very much appreciated from your fellow alopecians.

It's my pleasure!

I understand about the bullying, but in my case in high school it was because I had severe cystic acne from age 13 to about 20. I dreaded going to school and was made fun of because of my skin. I really could not do anything about it, no covering it up, it was my face. I tried every acne medication and doctor, to no avail. I was always so envious of the clear-skinned faces that I went to school with. Eventually I went on birth control pills and it cleared up, thankfully. Now I am 56 years old and have alopecia. I think God had be go through the acne thing, to prepare me for this journey. One thing about alopecia, it does make you stronger and for me, my faith is even stronger. The only thing better about alopecia than the cystic acne is that I can cover it up. I do wear wigs because I look and feel better with them, especially at work. I have only been dealing with alopecia for six months now. I hope I can be brave to go w/o wig or scarf this summer, while boating or camping.

You have the right attitude Lushiro and I am sure your strength is an inspiration to many young women going through alopecia. Stay strong and I wish you Peace and many more Blessings!

Thank you! And thanks for sharing your story ^_^
It's a process for sure, just take your time and find as much support as you can and you'll be okay.

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