Alopecia World
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My Journey With Alopecia Universalis
I was transfused with blood containing Alopecia Universalia a hairloss disease that removes every hair from the body, causing complete permanent baldness, without it I wouldn't be alive today honestly, that and the grace of god. The main reason for it was due to the fact that I was three months premature, as I've said without the blood transfusion I wouldn't be here. 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 pray 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. 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. 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 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. Dunno if this was enough clarity, but I didn't want to rant about every detail and elaborate. But I will happily if you have anything to point out.
This is my story. I hope someone learns something from this.
Replies to This Discussion
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Permalink Reply by Bald and Fabulous AKA Terri on
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thank you for sharing your story. I have never heard of a blood transfusion being the reason for alopecia and Im sorry that you have undergone so many hardships. I was early on diagnosed with alopecia (when I was 8 yrs old) And also suffered at the hands of bullies, which also resulted in my closing myself off from peers. 29 yrs later and it did take that many years, I have finally come to terms about my appearance, and living with alopecia. I have a new mission, to raise awareness, educate and show others that while a disease might have control over the ability to grow hair but I will not allow it to control how I live my life.
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Permalink Reply by Garden Girl on
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Roary,
I was deeply moved by your story. First of all, I didn't know that it could be transmitted via a blood transfusion. This seems important. Do the people at NAAF know this? I donate blood all the time.
The pain reflected in your story is so real. I lost all my hair due to AU when I was 15 and can certainly relate. I am in my 50's now and have managed to have a happy and fulfilling life despite the challenges of alopecia. When I was younger they bullying was outright mean...now it is subtler (not being included in a picture of my department). Alopecia still hurts a LITTLE Sometimes but it is nothing like the excruciating pain I experienced when I was younger.
One thing that helped was psychotherapy...actually I think it changed my life. It helped me feel good about me even when I was getting some very negative messages from the outside world. It helped me have the courage to seek out good people who were not judgmental and shallow.
You are in my thoughts and prayers. Hang in there. IT GETS BETTER! -
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Permalink Reply by LouiseMadeline on
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Hi Roary:
I am so sorry for all the emotional pain you have endured with this disease. I hope you will find much support, kindness and understanding here and hopefully, at a local Alopecia group in your area.
Science and medicine are moving in the right direction, and hopefully, a cure for us will come soon. In the meantime, do not define yourself by others inaccurate opinions or by your lack of hair. You seem like a strong, fine, well-articulate young man. Live your life as best as you can. Hold your head high and smile....the world will still judge, but YOU know the truth about the person you are.
Don't be ashamed or afraid to talk to a professional...amazing things can come out of a good therapy session.
Most of all, don't deprive the world or yourself, of the real you....you have much to offer. Your strength and fortitude are amazing. You have inspired me! -
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Permalink Reply by JeffreySF on
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Interesting theory. Alopecia contracted by a blood transfusion containing alopecia genes.
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Hi Jeffrey:
I used to be a regular blood donor, but after reading Roarys story, I hesitate to donate because I would never want to give this to anyone. Any thoughts? -
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Very good point, Riana.
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Im curious as to if the doctors have noticed cases of transfusions causing alopecia. I have never donated blood but have thought about doing it recently.
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Keep us posted on how you're doing. I have been thinking about you since I read your post last week.
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Permalink Reply by Nicole on
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Hi Roary, your story was very touching to me. I never known that the alopecia gene could be passed through a blood transfusion. This is new information for me. My son was born with a congential heart defect and almost died when he was only three months old. He had to have several blood transfusions and two open heart surgeries. If it wasn't for the transfusions & surgeries, he wouldn't be here today. We all have purpose and through the roads that we travel in life we will discover our God's given purpose.
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Permalink Reply by Lisa M on
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Hi Roary,
I'm really sorry to hear your story especially as a fellow AU and totalis too! I agree it's hard to deal with and sad at times.
My backgound is in medical science and I find it unusual that your doctor told you that you caught Alopecia from a blood transfusion? I don't mean to discredit your story however I really think understanding the condition will help you.
All blood transfusions are screened for diseases that can be transmitted via blood i.e. HIV and Hep A,B and C, so if Alopecia was a disease that could be passed on via blood then we would be certainly treated like a HIV patient and told not to donate (which we are not).
Alopecia is an Autoimmune disease which means our body treats our hair as a foreign object therefore tries to eliminate it, thereby causing us hair loss. It is also the most misunderstood condition however most clinical studies state that it is hereditary.
If your doctor is adamant that you "caught" Alopecia this may be from an infection called scarring Alopecia however again this wouldn't be from blood transfusion.It may be helpful to go and speak to a dermatologist (skin and hair specialist) who can also explain what Alopecia is, how to treat it and explain how it happened in the first place.
I hope this helps.
If I could take one positive experience from losing all of my hair (top to toe)...I have received more positive compliments about my "hair/wig" now than I ever did when I had real hair.
Take care
x Lisa
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Permalink Reply by Donna on
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I hope people really do not stop donating blood because of this. Would you rather have a loved one dead or bald? You get to make the choice. Sorry to cut to the quik but come on.
There are reasons why we experience what we do. Perhaps we need that experience in order to grow. My hope for all of us is to learn to love and embrace what is handed us. Learn to love and accept yourselves for the wonderful loving energy you are. Things could be so much worse.
AU offers an individual the opportunity to fully love and accept oneself. None of us are our hair. We are women, men, moms, dads, children, teenagers, fat, skinny, friendly, shy, weak, strong...all being given the chance to love ourselves unconditionally. I have had AU for 43 years and it has given me the chance to stand in the truth of who I am and I love me:)
I hope everyone with Alopecia finds their way to peace with it...
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