Click For Hope

Alopecia

When you find your tribe...

Alopecia, ClickforhopeJasmine Lopez1 Comment

I can't believe it's been 6 months since our Alopecia Campaign, and I realized that I never blogged the group photos. You guys, this shoot was one of the most humbling, mind blowing experiences for me. I had the amazing opportunity to photograph 6 lovely ladies, all in different seasons of life, but have Alopecia.

What I wasn't ready for was what would happen when you got them all together. Each lady was given a time slot for makeup and their individual session. I had prepared my team for a long day, but didn't expect for our storytellers to stick around. Before I knew it, everyone was sitting on the couches sharing their stories with each other. They were sharing wig shops, makeup tips and more. I wish I had another photographer with me to photograph the behind the scenes so you could see what we witnessed as I feel my words don't fully describe what we felt. Needless to say, I saw community take place in the most organic way possible.

I saw togetherness.

I saw walls come down.

I saw FREEDOM.

And most of all I saw a tribe of women form a bond together that I believe will last for years to come. As a source of inspiration and encouragement for each other. To be there in the dark parts of their journey as it unfolds, and to wipe each others tears as they get hurt, and to help each other heal and become whole. 

No story was the same. The one commonality was that they have ALOPECIA.

You can read each of their stories here:

   Amy

Alopecia | Camille

Alopecia, Depression, Clickforhope, Self Harm, Suicide, BullyingJasmine Lopez3 Comments
Even though I am bald, with Alopecia Universals, I know that no one can ever make me feel inferior without me allowing it: and that is something that will never happen again. . -Camille

Please share your story:

My story begins in the 4th grade, when I was at the mere age of 9. My mom was doing my hair for school and she found my first bald spot. She had no idea what it was, so she took me to the first of many dermatologists. This man told my mother that I use to much hair product in my hair, and that was why I had a bald spot.  As more hair started to fall out, my mother got more concerned so we went to another doctor. This doctor told us that it was because I wore my hair in pony tails and it was putting too much stress on my hair. Finally my mother took to the internet and found that I could possibly have Alopecia. And again, we went to another doctor. Finally we had a diagnosis, Alopecia Areata. He wanted me to get shots of corticosteroids directly into my head. Well, anyone that knows me knows that I hate needles. In fact, what 9 year old likes shots? After finding out some pretty negative side effects and only a 50 percent chance of hair growth, we voted against the shots. I did go to another dermatologist and tried everything out there from creams, to lotions, to shampoos, to oral steroids, and nothing seemed to work. So, I gave up on treatment and decided to let it be. The kids at school were relatively fine about my hair loss, although a couple of girls would say things to me when they were mad, but being so young it didn't bother me too much.

Then came the dreaded middle school. I tend to think that middle school is just some evil place where kids like me go to get eaten alive, but I guess that's just my experience. At the beginning of 6th grade I had lost both my eyebrows, but thankfully the hair on my head was finally growing back. The bullying started slowly and I was handling it as much as I could, but it started to get to the point where I couldn't concentrate in school any longer. I was being called freak and hairless cat, they threw food at me during lunch, would try to trip me, shoved me in the halls and meowed at me. This happened on a daily basis. And what made it worse was that I lost both of my best friends to the bullies: they joined in. From there everything went downhill, I fell into a depression, I began self harming, I stopped eating, and I planned my suicide. This was all at the fragile age of 14. All I could think about were those cruel words playing like a recording over and over. I would come home from school and find horrible messages on my phone or on my social media accounts; there was no way to escape, there was no way out. One night I finally decided to go through with my plan to kill myself, I was desperate to get away from my pain. The only thing that stopped me from taking my life at the very last moment was hearing my sister come home. And it made me wonder how she would have reacted to finding her little sister dead. At that point I knew I needed to fight, and I needed to get help. After going to the school several times throughout the course of three years and getting no help at all, I decided to create a Facebook page. I called it Dare to be Different. There I was able to vent about my experience with bullying and talk to other kids who were dealing with similar issues. At that point I also decided to write a letter to my school superintendent, Dr. Burke. I told him what had been going on and how long I had been dealing with the bullying, and most importantly I told him how his school was handling it! I explained how my grades were suffering due to the bullying and so was my mental health. He came in a few days latter and talked to me. He finally put an end to the bullying by telling those girls if they say one more word to me that made me feel bad about myself they would be expelled! So yes, the bullying stopped, but everything didn't magically get better. Now I was forced to deal with my self esteem issues, my eating disorder and my self harming. I will admit that it took a very long time to put myself back together. But having the love and support of my family and three very special people, Lana Becker, Randi Moxi and Constantine James, helped immensely. 

My Facebook page is now a non-profit organization proudly called Cam's Dare To Be Different. I also have a website, www.camsdtbd.org. I speak to schools and groups sharing my story in hopes to get through to my peers. My motto is to inspire, empower and educate. I want people to understand how powerful words can be; words can heal or they can kill. I have also gotten involved with platform based pageant, and won the title of Miss Teen Illinois International 2014 and I am currently Miss Huntley 2015. My story has been featured in numerous newspapers and magazines, which helps me gain exposure and, in turn, help others. I've also won several awards including The Everyday Hero Award in 2015. My story is also featured in two books: Head On Stories of Alopecia and Bullying is No Laughing Matter. I'm also in the works of writing my own book that will feature 21 other boys and girls who also suffer from Alopecia.

I'm happy to say that I am once again a high honor roll student at Huntley High School, maintaining a 4.0. As a junior, I enjoy taking honor and AP classes to push my self academically. I plan on attending a university in the fall of 2017 to study Psychology! My goal is to touch as many lives as I possibly can. I want people to understand that everyone is different and that being different is not a negative thing. With the help of my family, my friends, all of my supporters, and God I have been able to achieve so many things I thought were impossible. I feel incredibly blessed to be where I am today, and I can't wait to see what the future has in store for me.

Losing my hair for the second time was not nearly as bad as the first and even though I am bald, with Alopecia Universals, I know that no one can ever make me feel inferior without me allowing it: and that is something that will never happen again. 

I finally found my passion, my purpose, my destiny. 

Alopecia | Amy

Alopecia, Clickforhope, Hearing ImpairedJasmine Lopez1 Comment
"Let yourself grieve the loss of your hair. You are losing something that has always been a part of your life. Then, reach out to others." -Amy

Please share your story: 

I have had Alopecia Areata since I was 13 years old. Alopecia Areata is an autoimmune disease where a person's body rejects their hair follicles. Someone with Alopecia have spots of baldness on their scalp, others have no head hair, and others have no hair on themselves at all. Although it's not a physically harmful disease, Alopecia can be psychologically scarring.

When first diagnosed I had just 3 spots the size of quarters on the back of my scalp. My hairdresser was the one to find the spots. A trip to the dermatologist confirmed the diagnosis. At that time the doctor did steroid shots into my scalp and those spots grew back in.

In my late 20's my hair started falling out again. This time much larger spots. Eventually the back of my head was almost gone. I was perfecting the "comb down" to try to hide my balding spots. I got the steroid shots again, however, this time not all of it grew back. I found myself envying women who could wear their hair in a ponytail. It is funny, as I didn't have very long hair, but I thought "If I could just put my hair up I would look so much better". A silly thought, I know.

Until the age of 37 my hair grew partially in then fell out numerous times. There was only a circle of hair at the top of my head, which I proceeded to shave off. I chose to wear a wig as I wasn't prepared to walk around bald yet. After a month I realized that I wasn't comfortable not walking around bald. I was teaching my children to be happy with who they are and here I was covering who I was with a wig. I felt like a hypocrite. It was a Monday around 11 am when I whipped my wig off at work. I threw it on my desk and decided I was done with that wig. It is my personal choice to not wear a wig, just as it is others' personal choices to wear wigs. Neither is wrong. It has to be what is right for that individual.

One day, while waiting for my food at my local Sonic, the teenage girl who was at the carhop stopped at my window and asked if she could ask me a question. I expected the "Do you have cancer?" question. Instead she asked, "Do you have alopecia?". I told her I did, to which she replied, "I do too, and I have never met anyone else with alopecia before." This chance encounter led me on the path to start a support group through the National Alopecia Areata Foundation (NAAF) in September of 2013.

I wanted to be there for others who were not comfortable, or, those who were upset with their condition. Since I am very comfortable being bald I thought I could offer my support. What I didn't realize was how much I also needed the support group. It is so refreshing to be among a group of people who know what you are going through and have dealt with the stares and cancer questions as well as other issues that come along with losing your hair.

With the loving support of my family and friends, I am a happy, confident, bald woman. My goal now is to educate others on what Alopecia Areata is and to be available to support others who have Alopecia.

How has your story shaped you into who you are today?:

I have been hearing impaired my whole life. I am deaf in one ear and wear a hearing aid in my other ear. Growing up the hearing aides did not work with my type of deafness, so I went without them. Most people knew me as a quiet, shy kid. Often times it was simply not being able to hear people. Eventually I got a hearing aid (at the age of 32).

At this point you might be wondering how that relates to my Alopecia?!? Well, my deafness shaped much of my personality as a kid. I felt like few people understood what it was like to go through life hearing impaired. Eventually I became a bald, hearing impaired woman. Having experienced childhood with people not understanding what I was going through, all of the sudden I was thrown into adulthood with the same feelings. But, as an adult, I felt better being able to handle what life has thrown at me. I wasn't thinking of what others were going through with their Alopecia, because I felt pretty comfortable. Until the Sonic encounter, then I understood there were others out there that needed help.

 Living with being bald and hearing impaired has shaped me into a person who wants to help others learn to live with what life has thrown at them. I am happy and have fantastic husband and wonderful kids, others with the same affliction can reach for the same things, if they aren't already there.

What encouraging words would you give to someone who shares a similar story? :

Let yourself grieve the loss of your hair. You are losing something that has always been a part of your life. Then, reach out to others. Don't let Alopecia be your life, it doesn't define you.

Photos by Jazi Photo

Styled by Co Chic Styling

Makeup by Jacqueline Gamache

Blush Tank c/o Milk Handmade

Alopecia | Caroline

Alopecia, Bullying, ClickforhopeJasmine Lopez5 Comments
"I learned how to hide my AU. I felt as if people wouldn’t accept me for me so it became my secret and only my family and those I truly trusted, which were not many, knew the real me." -Caroline

Please share your story:

My name is Caroline Alanis. At the age of 4, I lost my hair to Alopecia Universalis (AU). For those unaware of this condition, AU is an advanced form of alopecia areata. Although the exact cause of AU is unknown, it is thought to be an autoimmune condition in which an affected person's immune system mistakenly attacks the hair follicles.


Growing up bald was not easy. Although I had parents that tried to show me how to be courageous and tried to show me just how beautiful and blessed I was, I still had to endure the everyday pressure of life. There was the pressure of seeing little girls with beautiful hair and wishing every day that I had that. There was pressure of kids being mean and pulling off my bandana and laughing at me because I was bald. There was pressure of name calling and bullying.

My parents finally convinced me to start wearing a wig. It didn’t make things that much easier. I remember walking home from school one day with my brother and a girl decided it would be fun to pull it off and throw it on the ground. At that moment, all I could do was cry and run home. Every day I feared leaving the house, the emotional scar is unimaginable.

I learned how to hide my AU. I felt as if people wouldn’t accept me for me so it became my secret and only my family and those I truly trusted, which were not many, knew the real me. In High School only a few knew about my AU. This made it so easy to try to blend in; I never wanted to stand out, never! The ironic part about it was I would always be the one to be called by teachers to lead a project, to sing solos, participate in plays, fashion shows, and they even nominated me to join homecoming queen and enter a beauty pageant. One thing I realized, my fear never really went away by keeping my AU a secret and the emotional scar was also still a part of my life.

When I started my family, my AU was not only my secret but it had become my husband and my children’s secret. I held my family bound to my alopecia. When they were infants, I wouldn’t carry them in public for fear that they would pull my hair (wig). They were taught never to touch mommy’s hair ever! They could never have friends sleep over because it would be very uncomfortable for me to be me in my own house.

I am now 48 years old; married with 3 beautiful daughters. I joined an International Alopecia Group in July 2015 and that's when I realized my journey with AU has prepared me to be able to help others like me. But my baldness was still a secret. How do I encourage others to accept themselves if I myself could not let people know about my condition. So I started telling my husband's family and friends. I only wanted to tell people, not show people. But of course, God had other plans for me. The oddest thing was I started becoming uncomfortable wearing my wigs. This was strange because I have been wearing them for 40 years. It took a lot for me to take a look at myself bald. How can I tell my children and others that beauty really lies deep within if I myself can't see passed my lack of hair.

My husband helped me with my small steps into seeing myself for who I was, a beautiful woman living with AU. Slowly I found myself no longer wearing my wigs. We would go on drives, take walks on the beach and even take a selfie. I felt free, my secret slowly fading; including the emotional scar.

It started getting cold and I didn't like my hats since it looked terrible without any hair. I was pretty sad, because I really did not want to start wearing my wig again. I just prayed and asked God to lead me in what I am supposed to do. On Sunday October 4, 2015, a lady stopped me and said. "Excuse me, can I ask you a question?" I said "sure." "Do you have alopecia?" I said "yes!" She said "so do I.” Then she asked. "How do you do it?" I knew she meant how am I walking around without my wig? I told her "I don't know?" I said "This is all new to me." I told her "God is giving me the strength to do this. I couldn't have done this on my own." So that day, I officially retired all my wigs. Yes I put them all away for that special occasion.

I was so fortunate enough to meet others just walking around bald. They said “I would have never seen you had you worn your wig." How can I reach others if I am not true to myself? It took a lot to accept myself, with lots of guidance from God. I am finally in a place where I no longer need to wear a wig to feel complete!

How has your story shaped you into who you are today?:

Although growing up with AU wasn’t easy, as I look back, it has made me appreciate everything I have in my life. For the longest time I never realized how bound I was by my secret, my emotional scar and my wig.

Now, I no longer hide behind my wig. I am living with AU and you could say that I’m proud that I can say that and show people that I am still beautiful without hair. Now when I tell my daughters it is just hair, it is not just talk, I actually walk the walk. I used to think my lack of hair was an imperfection; I know now that it is my strength.

I am no longer afraid of not having my wig on. It was my armor but I was meant to stand out not blend in. God has always wanted me to stand out, now I am no longer afraid to stand out. I embrace it. And I am meeting and connecting with others who are just like me.

What encouraging words would you give to someone who shares a similar story? :

To all the parents who have children with alopecia, I can only imagine how devastating it is for you. But I must admit, I had great parents who never showed me their heartbreak. They only kept reinforcing I was blessed and special. Alopecia children grow up to be strong. Let them shine! For all the ladies and gentlemen, you are not alone. I know it can be difficult to not have hair but I can honestly say now, I wondered why I waited so long to surrender to alopecia! I understand that our struggles are the same but our journeys are different. So whatever makes you feel comfortable to be you, wig or no wig, let it be your choice. We only have one life to live, so live it!

Styled by: CoChicStyling

Photos by: Jazi Photo

Alopecia | Kara

Clickforhope, Alopecia, Depression, AnxietyJasmine Lopez1 Comment
My children think I should walk around without my wig, my husband thinks I'm beautiful just the way I am... I wish I believed them! I look in the mirror and see all my flaws.- Kara

 

Please share your story:

 Hi! My name is Kara. I have had Alopecia for 30 years now. WOW! 30 years! I've never written that down or even thought of that before. I was 13 when I noticed my first patch of missing hair. I thought it was stress/anxiety. It's the prime age for liking boys, worrying about what and how people thought of me and this happens to me? At 13 years of age, I thought all my plans... boyfriends, being beautiful (on the outside), marriage, having a family was gone. I thought the only way someone would look at me now is "Poor Kara, she must be sick." But throughout my life, I've learned that's not the case.

I am a fighter! I am so MUCH more stronger than I ever gave myself credit! Maybe beauty starts from within?
I battle with anxiety and depression (this disease will do that to you) but I've been married now for 17 years to a very handsome bald man and we have 4 children (with full heads of hair!) My husband and children think I'm beautiful and that is all that matters to me.

I have only exposed my head once and that was last summer at the top of Pikes Peak in Colorado. I felt free and scared at the same time. The way my family (sister in law & brother in law included) reacted was so different than I thought, so supportive, crying right along side with me and so proud of me.
I think I'm ready for the world to see me... the real me!!

What compelled you to want to share your story?:
I'm a mom, trying to make a difference in the world. My children think I should walk around without my wig, my husband thinks I'm beautiful just the way I am... I wish I believed them! I look in the mirror and see all my flaws. I want to have the flowing hair and beautiful eyes of a model, but doesn't everyone? Almost everyone? Maybe bald can be beautiful too!

What encouraging words would you give to someone who shares a similar story? :

Not many people are familiar with Alopecia, it has No reason, No cure. No warning!
I thought at 13 my life was over ( I know it sounds over dramatic, but aren't we all at 13),
You can have a "normal" life living with this disease, You CAN enjoy things (like not having to do my hair everyday, shaving, bed head!) There are all kinds of beautiful! I've learned to keep going and thank God I did! Because I have beautiful family and friends that love me for me.

Styled by Co Chic Styling

Makeup: Jacqueline Gamache

Photos: Jazi Photo

Printed purple kimono wrap by: Milk Handmade

Alopecia | Katie

Clickforhope, AlopeciaJasmine Lopez4 Comments
You could either feel really bad about your insecurity and hide yourself from the world, or you could go out and show everyone who you really are and shine. -Katie

Please share your story: My name is Katie Duh and I have Alopecia. I was born like any other normal, healthy baby. About six months into my life, my hair began to fall out in chunks. My parents noticed my eyelashes and eyebrows were falling out as well. Worrying about my heath, they took me to the doctor where I was referred to a dermatologist. From that point I would now have to live my life with an unpredictable disease called Alopecia. As I grew up I was completely bald from head to toe for a little over a year. In the summers my hair would grow back a little and then fall out again in the winter. At an early age, I joined gymnastics and my friends never noticed anything bad about me. As I entered elementary school I still made friends easily and was never picked on because of my hair. I learned to ignore the constant stares from unknowing people and answer any questions people might have. Multiple people throughout my life have asked me if I was "sick", I didn't mind though because it was easy to assume I was because of my shiny bald head. Next stop was middle school, I was nervous because I entered with very few friends and I knew that my story would have to be told over and over again to the new kids. It didn't stop me from meeting new friends and joining sports. I am now in seventh grade with many dear friends that are special to me and encourage me to be who I am every single day.

How has your story shaped you into who you are today?: I am a very strong, confident young lady due to the positive vibes from my friends and family. They help me to recognize my natural beauty and to not beafraid to show people who I really am.

What compelled you to share your story?: I think I would be a great roll model to girls with or without this disease because I proved that nothing can stop me from being who I am. I show that even the lack of hair should not stop anyone from showing their confidence and sharing their story.

What encouraging words would you give to someone who shares a similar story? : I would say are you could either feel really bad about your insecurity and hide yourself from the world, or you could go out and show everyone who you really are and shine.

Styled by: Co Chic Styling

Photos by: Jazi Photo

Alopecia | Nasim

Clickforhope, AlopeciaJasmine Lopez1 Comment
It's the simple, yet enjoyable, things in life we take for granted because we're too busy worrying about how we look to others. -Nasim

Please share your story:

Hi my name is Nasimbanu Tailor. I am Indian,  and my parents are from India. I was born and raised on the north side of Chicago. On August 15, 2105 I celebrated my 31st bday with my family, and what happened five days later changed my life forever.

I was sitting in my car at a red light. I was playing with my hair, and noticed something different on my head. I brushed it off and continued to play with my hair and began to feel a smooth area. So, I took a quick selfie, and freaked out, as I told myself, "I'm going bald." I then recalled that my friend a few days before my birthday was curling my hair and she had burned me on accident.

In October, I noticed clumps of hair had fallen out, which resulted in a totally smooth, pink patch on my scalp; the area had gotten bigger . So after several Google searches and self diagnosing I finally went to a dermatologist.

On Oct. 19 2015, my dermatologist diagnosed me with Alopecia Areata (A.A.). I was speechless.  If you don't know what Alopecia Areata is, it's when the immune system mistakenly attacks your hair follicles. A sudden hair loss starts with one or more circular bald patches that can overlap. It can't be cured, but treatment may help.

My dermatologist gave me few options: topical cream, injections or just wait until it grows back on its own which can take a year. I wanted the fastest route as possible, so I chose injections of corticosteroids into the scalp. I chose to go in intervels 5 weeks for a few months. I was given multiple injections with a tiny needle, for me it was between 15 to 20 injections per visit. It depends on how big your bald patch is. I have a high tolerance for pain, but it was very painful. I couldn't believe how much it hurt and that I had to continue this process a month later. The side effects that I experienced were a depression in the skin, which eventually went away, and some tenderness for a few days.

All and all, I continued my visits to the dermatologist. As each month passed by, my hair was slowly growing back, which gave me hope. Some of my hair grew in black and others white since it didn't get its pigmentation. Finally, on February 3, 2016, at another doctor's visit and after an increased steroid injection my hair remarkably grew back. You couldn't see a huge bald spot anymore. I don't have to get anymore shots unless more patches appear or that area needed more growth. It was a huge release.

I continue to stay positive, pray to God and hope for the best. I also found a support group for Alopecia during this journey and met some amazing people who have the same condition or other types of Alopecia. They range in all ages and ethnicity. It has helped me to be confident, more knowledgeable and most of all I have more friends in my life!

How has your story shaped who you are today?:

I know I'm not alone, and am amazed how many people have A.A. I'm more confident about myself knowing there are more people like me. I don't sweat the small stuff especially since they said stress can play a role for us with A.A. (I don't know how accurate that is). Knowing that I "might" lose more hair, or my eyebrows, or eyelashes, I've started to put mascara on. I've started styling my hair instead of just throwing it in a rubber band. I'm having fun with what I have until it's taken away. I'm sharing with others what A.A. is to those who don't know what it is, and hope to educate them so there will be less bullying, especially for kids with A.A.

Why were you compelled to share your story on our blog?:

I want to let people with A.A. know that they aren't alone, and that's it's okay to speak about their condition, of course when they are ready.

What encouraging words would you give to someone who shares a similar story?:

Hair doesn't define who we are as a person, that we would truly know who we are on the inside out. You are not alone, you are beautiful. Hey, at least we can save lots of money from shaving products and hair stylists. We can actually spend money on enjoying life like traveling, a hot air balloon ride (I've always wanted to do this, hehe..), painting, etc. It's the simple yet enjoyable things in life we take for granted because we are too busy worrying about how we look to others.

Makeup: jacquelinegamache.com

Styling by http://www.cochicstyling.com/

Alopecia | Destiny

Alopecia, ClickforhopeJasmine LopezComment

Please share your story:

On Dec 24, 2012 we were on vacation and noticed spots of missing hair on Destiny head.  We made a doctors appointment as soon as we got home, and at first the doctors diagnosed her with all kind of things. We tried all kinds of medicine but her hair just keep falling out. At this point she started wearing hats to cover it up. People would ask questions and and wonder what was going on. The doctors told us she has an autoimmune disease called Alopecia – this is when your immune system fights the hair follicles because they think they are dangerous. We are standing firm in Destiny’s healing and believe that she will be completely restored from this. But while we wait our girl shines in the glory of God and doesn’t let this move her.

On July 22, 2014 Destiny decided that she no longer wanted to wear hats.  She wanted to wear bows just like everyone else.

On July 27 Destiny’s eyebrows and eye lashes started growing back. We have stayed firm in believing God this whole time. We still believe that God will heal destiny and that she will grow a full head of hair someday soon.

A little about Destiny.

Destiny is a happy girl and always has been, she walks around with such joy and confidence. She is truly an inspiration. She never has a bad day and she never walks around embarrassed or sad. She has faith that her hair will come back and has asked us to buy her hair things and brushes. As her parents we buy them standing in faith with our strong beautiful girl.  She is truly one of a kind and hasn’t let this get her down.  She shines through it all and she makes it all look easy.

Every night her father prays this prayer with Destiny, “Jesus, I give you all the praise and I give you all the glory! One day, I’ll tell my story. For those that wait upon The Lord, He will renew their strength. They shall mount up with wings of eagles. They will walk and not grow weary, they will run and not grow faint. In Jesus name we pray…..Amen.”

Destiny loves balloons and we have used them as our hope sign. It’s a symbol of faith, hope and belief that soon her miracle will come.