Tag Archives: aolpeciaawareness

McKenna. Living with Alopecia

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This is the face of Alopecia.

McKenna shares her story of realizing what was happening to her body, and how she is overcoming the feeling of defeat every day by being strong for her girls and for others who have this auto immune disease. Read her words below.

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“There is a possibility that you will lose all your hair.” This is one of the last things a woman wants to hear from her doctor.  I will never forget the first quarter size bald spot I found on the top of my head. It was August 2012 right after volleyball season had started and school was about to begin. I told my mom about it and she suggested seeing a dermatologist. The dermatologist explained to me that it might be Alopecia Areata and there is a chance that I could lose all my hair. WHAT? My hair defines who I am. Who would I be without my thick, beautiful hair? My doctor injected the spot and thankfully hair grew back. Another spot appeared the very next August.  When I went in to receive another injection I asked if there was a correlation between stress and the bald spot. He explained that there is no correlation at all. I didn’t agree.  And just like clockwork, every August a new spot would appear until 2015.
In May 2015, I gave birth to our second daughter.  My hair started its natural postpartum shedding a couple months later, but this time it was a lot more.  I will never forget going to team camp in July and my hairline on my forehead started to itch and burn, but I never thought much about it. Little did I know that was the beginning.  Bald spots started appearing more and more in the next couple months and I was visiting my dermatologist frequently.   On top of injections into my scalp, they had my using topical steroid creams to help out the process.  I was doing everything to cover up my bald spots including using makeup, hair fibers, and headbands.  Nothing was working. When volleyball season was over, within a month, majority of my hair was gone.  I will never forget taking my last family photograph on November 1st with hair, or what was left of it. I will forever cherish that photograph.
Showers were the worst. My hair would come out in clumps and my drain was covered with my hair. I would just stand in the shower and cry as I feel more and more of my scalp as hair was just covering my hands. My dermatologist referred me to University of Michigan to see a specialist because he said there was nothing more he could do for me.  This appointment meant the world to me because it gave me hope to possibly growing my hair back.  Little did I know I would be walking out of the office crying with all my dreams crushed. There was nothing they could do for me and they explained that they didn’t know if it would ever come back.  It had felt as thought my life had ended.  I couldn’t go on wearing headbands, scarves and hats to cover up my head anymore. What was I going to do? I am not going to lie. I wanted to give up. I cried more those first 6 months than I ever have in my life.  I couldn’t look in the mirror. The reflection was not me. Will I ever be able to look at myself in the mirror again?
    Here is the bigger problem: I have two little girls at home who are watching my transition and how I was reacting to the battle I was facing.  I had two choices.  Either allow Alopecia to define me OR I was going to define it! I needed to show my girls that throughout our life we are going to be fighting many battles both big and small, but we must fight because we are strong women. I decided it was time to shave my head and get rid of the last few strands that I was holding on to for dear life.  I felt free. I felt scared. I felt nauseous. I felt strong.
My mom, who also has experienced mild cases of Alopecia Areata, was heartbroken as any mother would be because she felt so helpless. She refused to give up options and was determined to exhaust every option. One of her former students a well known dermatologist in our area and agreed to see me immediately and I was forever thankful.  For the next six months I would receive weekly injections into one area of my scalp at a time. Let me tell you that those two minutes were two minutes from complete hell.  The pain was so excruciating but worth it because a little hair started to grow back. It was so spotty and sparse we decided to end the injections because the pain was no longer worth it.  We then moved on to various medications some that made me nauseous while others did nothing.  I even tried the holistic route, but with no results I decided to give my body a break.
Losing my hair has been a complete emotional rollercoaster. I stopped posting pictures of myself and sadly stopped taking pictures with my daughters because I was ashamed of what I saw in the picture. In the beginning I refused to wear a wig because then I felt as though I was accepting the loss. I felt as though I was grieving. I was grieving the loss of my hair. I was grieving the loss of me. I tried to hide it as best as possible especially from my daughters. My bedroom became my sacred place of where I would allow myself to just lose it.  I never wanted to show my sadness in front of my daughters. I want to prove to them that WE can fight any battle that is in front of us; that we are stronger than we ever imagine. This mindset turned my perception around.  I started to have more good days than bad. I reminded myself that God gives all the strong people the toughest challenges and I will be a better person because of this.  No longer was I going to hide, I am now going to embrace Alopecia and the gifts it has provided me. 
    Alopecia had completely changed my outlook on life. It has inspired me to look at the positivity in others and the world rather than negativity.  It has proved to me that I am stronger that I ever imagined and I can fight anything that comes my way. The stares and the “do you have cancer?” questions use to bother me, but now I embrace them.  These questions have allowed me to meet new people, feel vulnerable and spread awareness about an autoimmune disease that affects 6.8 million people in the United States that too few people know about. They have also allowed me to listen to others amazing journeys that inspire me daily.
My mission in life is to raise as much awareness about the Alopecia as possible while strengthening those who fighting their own battle that may be Alopecia.  This past summer I have raised over $4,000 for the National Alopecia Areata Foundation by dedicating the three sprint triathlons I competed in, held an Alopecia Awareness game at the Toledo Mud Hens on August 3rd in which 236 people bought tickets for and will be hosting an Alopecia Awareness night at the Cleveland Indians on September 14th.
Besides my family, no one has seen me bald. I wear a baseball hat when I am not wearing a wig.  My three year old will ask me “mommy, where is your hair?” and I will just tell her that I will put it on later. I decided it was time. It was time to step way out of my comfort zone and be photographed bald.  The first time I looked at the picture taken just a couple weeks ago and three years after losing my hair, I felt as though I was grieving again. All my emotions bombarded me just as though I had lost my hair all over again.  It was difficult to see, however, looking at it over and over I started to feel more comfortable with myself and accepting that that is me! Will I ever be 100% comfortable with myself? No. But what woman is? What I do know is that I will continue fighting every damn day to be proud of the woman I am and prove to my daughters that hair does not define us. It is our heart, character, and strength that does. Will I ever be able to walk out of the house bald? I don’t know. Some people with Alopecia are and I hope to be someday I am not just yet, but I am getting closer.  
    In the same photo shoot, we took family pictures and I can honestly say I saw myself for the first time happy even though I was wearing a wig, I was 100% comfortable with what I saw.  Things take time and everyone’s journeys are on different paths.  We must respect and understand that everyone is fighting their own battles regardless of its size.  And we must respect that we all battle differently. What we can do is be there for one another with unconditional love and support.  I know I would have given up a long time ago without the support of my husband, parents and friends. They have been my rock and I hope to be someone’s rock along their journey.
I am Alopecia Strong.

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McKenna, thank you SO MUCH for allowing me to be a part of your journey and helping to spread awareness.

 

For more information, please visit naaf.org

McKenna also suggest finding local support groups on social media.