Finding Strength Through Alopecia: A Father-Daughter Journey of Love and Resilience

About Me

Hi! I'm Caila Abou-Saab, and I'm 21 years old from Carle Place, New York, but I originally grew up in Jericho, New York. I go to Binghamton University, where I joined groups and met so many amazing individuals. These people, including my lovely home friends and family, have seen me at my highest and my lowest points, and without them, I would not have that emotional support to help me navigate through something that is yet somewhat common, but still heart-wrenching to have to deal with, especially having to deal with it at a young age, in an area that is not the friendliest, and then having to deal with it for the rest of your life.

The Diagnosis

In 2014, on a chilly October afternoon, my father started to notice my hair was very thin at the top of my head, which was very unusual because I've always had thick, long hair. He instantly booked a dermatologist appointment for the next week. When that day came, the thinning got worse. The doctor examined my head and left the room for about 30 minutes. My father and I sat anxiously waiting for an answer, hoping it was nothing. Finally, the doctor came back and told my father, "Your daughter has alopecia areata." He explained that it is not a life-threatening disease, nor is it a disease that will make me physically ill, but it is an autoimmune disease that has no cure. My 10-year-old self was oblivious, as I had no idea what any of the terminology meant, so I just let the adults speak. I didn't understand anything that day. I didn't understand even a week later, but as I had to deal with this for the next months, and even years, I started to understand it more, and each time I would get a better idea about what this autoimmune disease consisted of, it just kept on getting more depressing. Each and every new realization came with a new, inevitable wave of sadness, fear, and frustration.

Understanding Alopecia

It is quite mind-boggling that something as simple as your hair can hold so much of your identity. We don't realize it until it starts slipping away slowly, strand by strand. It's not about the cosmetic aspect of it; it's about losing that sense of control, familiarity, and having to adapt to it in ways that no one prepares you for. Although people may not notice, you not being able to recognize yourself is just as bad as it unravels deeper fears within you. Alopecia Areata (AA) is an autoimmune disease where the immune system mistakenly attacks the hair follicles because it thinks something foreign has entered the body. When that happens, the typical response would be with increased hair shedding or bald patches, typically most seen on the scalp, but it can affect anywhere on the body, including eyebrows and eyelashes.

The thought of this sneaking up on you anytime is devastating. Once one starts to form, it is very difficult to halt it. You just have to let it go through its life cycle. Stress or anxiety is one of the main triggers for alopecia areata, but already having it causes more than enough stress, leading to more and more hair loss. It is a never-ending cycle that I have now accepted, but it is still very hard to deal with. Having the stress whether or not people are going to notice my hair thinning or if my hair blows in the wind and exposes my patches in public or wrapping my hand around my hair to feel that it has gotten thinner in the past few weeks or associating an everyday activity of brushing my hair with fear, just to see a handful of strands laying on my hand, no longer my head, which happens way too often to this day, and I just wonder, will there be a time where there's literally nothing left to lose? In these very moments, each lost strand feels more than a piece of hair; it feels like a piece of my spirit just slipping away, my confidence slipping away, and my happiness slipping away. Instead, doubt and anxiety come rushing in.

The Treatment Journey

Even though there is no cure, there are treatments for it, most of them being expensive. The first treatment I received was injections in the scalp. I know that sounds daunting, and it was at first. I could not accept the fact that I had to get at least 5 injections per patch, depending on the size, but I had to do it. The dermatologist referred me to an alopecia specialist, where we tried other treatments, such as topical and oral treatments. Once my body started to get used to those, I began laser treatments, which were 2-3 times a week, and very expensive. Luckily, at the time, my insurance covered it. My hair responded very well to this treatment, along with the others, as I had little to no patches and was on top of my routine.

It wasn't until my insurance stopped covering it. They deemed laser treatments for cosmetic use. How could they say that? It's more than just hair; it's mental health, my dignity, how I present myself to the world. Yet, the system carelessly labels it as "cosmetic" as if having that constant pain of watching yourself disappear strand by strand isn't enough. Luckily for me, my dad stepped in without any hesitation, paying for my treatments out of pocket. I could and still cannot thank him enough, as I am forever grateful, and to this day, he still pays for all of my treatments. He didn't just financially support me; he gave me a lifeline and constantly reminded me that we were fighting this together, and I was never alone in this journey.

My Father's Unwavering Support

My dad has always been there for me since the second he noticed the thinning. After the diagnosis, he spent all of his time researching the disease to try to get a better understanding of how it is triggered and how we can prevent it from getting worse. Since stress is the number one trigger, he would meditate with me, even when I didn't want to, just to calm my nervous system down to slow down any potential patches from showing up. He would look up natural home remedies that miraculously grew back people's hair, and we would always try them out. Whatever hair oil he read about, he would always buy it on Amazon, and it would arrive the next day. Any chance he saw that could potentially help me, he always went for it. Any chance he got to take any stress or burden off my shoulders, he did without any hesitation.

He would comb my hair with such ease, apply any treatment effectively, and keep up with my overall progress. I remember after the diagnosis, he suggested that I part my hair to the side to avoid people from seeing my thinning, but he did not make that obvious to me at 10 years of age that that was the reason. He did not want to be the reason that I was uncomfortable in my skin. Instead, he would take different routes, routes that made me feel empowered and protected my innocence. He never made me feel like something was wrong with me. He made simple adjustments that let me hold onto my confidence, even when I didn't know I needed it during my prime adolescence. If he could carry all of my stress, he would, and he still tries to. Even to this day, at 21 years old, he still holds my hands when I receive my treatments, wiping every single tear off my face, the tears that come pouring out of my eyes every time I sit in that exact chair, each time, constantly reminding me of the pain, fear, and the helplessness that may still linger. But in those very moments, his presence brings me back to reality and softens it all. He reminds me that I am never alone, and we are in this together.

Why I Became a Mentor

I saw what my dad did for me, that lifeline and friend that I didn't know I needed during one of the hardest and most confusing times in my life, and I want to do the exact same for others. I want to offer that same comfort and strength to kids who are going through their battles. I know how isolating it can feel to go through battles while trying to seem "okay" on the outside, and putting a fake, meaningless smile on your face to avoid any attention. I know how hard it can be to ask for any help or to be vulnerable, especially when you're not sure if anyone would understand. That's why I want to be the person who steps in quietly but meaningfully. I want to reiterate that they are not alone through whatever they are dealing with, which gives them an even bigger reason to persevere and not hide behind a fake smile. Sometimes, all it takes is one person who sees you, shows up, and reminds you that you're not broken, you're becoming. I want to be that person for someone else.

Through my journey, I realized the importance of building a connection in order to prompt healing. When someone feels understood and supported, even the worst times feel so much more uplifting. That's the impact my father had on me, and that is the impact I hope to have on someone else. Being a mentor isn't about giving advice; it is about having that constant, fulfilling presence, the type of presence that reminds someone that they have the power to keep going, which all comes from within.

My Goal as a Mentor

My main goal as part of this team is to be that compassionate and consistent presence in a young person's life. I want to create a safe space where they know they feel seen, heard, and valued the way they are. With me, they will know their story holds purpose, power, and they will never be alone. They will see this power unravel from within right in front of their eyes. Our minds hold this great power, and once you firmly believe an outcome, your brain will always find a way to achieve that outcome. Our thoughts shape our reality, and I want to help these kids recognize the power they hold within their minds. I want to encourage them to trust in themselves and their ability to heal. Believe in the impossible, even when times are overwhelming. If I can help someone discover that strength and belief within, while reminding them they are never alone, then I'll know I've made a real impact.

Giving Back

What makes me feel alive is knowing that I've made someone feel seen, valued, and loved, even from afar. For several years now, my family and I have been St. Jude's Children's Research Hospital donors because we believe in the emotional healing that stems from knowing that others care and feel for you. Along with donations, we also send heartfelt messages filled with words of encouragement and affirmation to remind these children and their families that even people in the outside world are thinking of and supporting them, and I know that this feeling, knowing that you have people that genuinely care for you and support you every step of the way, carries the power to create a kind of healing that medicine alone can't always offer. Knowing that a small gesture can bring a moment of peace during a storm is what lights me up. That kind of love and care has the immense ability to restore hope and spirits, and even being a small part of that process is what truly makes me feel alive.