February 25, 2023
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While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In this series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.
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Ashley:
For pretty much the entirety of 2021, I was experiencing really weird symptoms—such as night sweats and fatigue. My body felt completely off, and deep down, I knew something was wrong. But every doctor I saw told me I was totally fine, and there was nothing to be concerned about.
Then, I was in a freak accident: I fell off a ladder and ended up in the emergency room. While I was in the hospital, the doctors ran some blood work, and that’s when I began my path to getting answers.
At 20 years old, I received a shocking diagnosis.
One ER doctor told me my white blood cell numbers were extremely high—at the levels of a blood cancer patient. He instructed me to get retested in a week, to double check if it was accurate.
I kind of brushed it off, and didn’t think much about it. Then when I told my mom what the doctor said, she insisted I get retested right away. I’m so thankful that she did, because when I finally did, the numbers were still extremely high.
The following week, I went to see a hematologist-oncologist at City of Hope. With my mom by my side and my sister on the phone, the doctor diagnosed me with chronic myeloid leukemia (CML). As he was telling me this information, I was in complete denial. After all, I thought I was a healthy 20-year-old woman, how could this be possible?
I learned that it was going to be a long, hard road treating CML Leukemia, because it’s a chronic cancer. It was something I would have to deal with for the rest of my life.
My oncologist informed me that there was a treatment called SPRYCEL, which is a type of Tyrosine Kinase Inhibitor (TKI) Therapy1 that identifies and attacks specific types of cancer cells while causing less damage to normal cells. I also had to do chemotherapy and immunotherapy alongside this medication.
These treatments are so amazing and lifesaving, but they also come with a lot of side effects. For instance, I started getting a lot of really bad skin rashes—I had angioedema, which basically looks like a really bad allergic reaction, which was a result of my body rejecting the medication. I had to be hospitalized many times as a result, which was really scary. My world was basically turned upside down.
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How my health journey sparked inspiration.
After my diagnosis, I did everything in my power to understand how to best support my body through this journey. I poured through research, reading whatever I could find to learn about my diet, how my environment affects me, etc. Through this research, I became incredibly aware of just how many potential toxins and chemicals were inside my home, hiding in my makeup, hair products, and more.
I immediately called my sister Samantha and asked, what can I do? I loved my products, and all the natural options I’d tried just didn’t work for me. For instance, certain shampoos were making my hair tough and brittle—I was already experiencing a lot of hair loss from my treatment, so this was really discouraging. A lot of the products I was using on my hair also made my skin rashes even worse. I felt so overwhelmed, and I wasn’t sure what to do.
Samantha:
I wanted to be there for my sister, and help her in any way I could. So when she told me about her challenges with hair products, I thought of a way to take action.
I’ve started and sold a few businesses in the past, so I was confident this could be the next project to take on. Our family business is actually haircare and skincare product development and manufacturing. Our mom is a cosmetic chemist and formulator with an extensive background. We decided to use our family expertise (and also team up with some highly experienced lab technicians and formulators) to develop products that were safe for my sister to use.
This process definitely wasn’t easy, and we went through a lot of different iterations. Our goal was to create hair care products that were completely safe, and could also give Ashley healthy, strong, hydrated hair.
We wanted to make something that allowed people to feel good, and not excluded from their daily routine. It was important to create an enjoyable experience with our hair products. That’s how The Cleanest Lab was born.
What I want people to understand about living with CML Leukemia.
Ashley:
You lose so much going through this experience. You can’t really be around people because your immune system is compromised, you can’t eat certain foods because they could react to medications you’re taking.
I always ate a very balanced diet, but I would occasionally eat foods like frozen packaged meals. Now, I’ve gotten rid of all of that, and I cook a lot more—I have to know exactly what’s going into my food, so I can protect my body.
While it might seem so minimal, before I had cancer, I would light candles every day. Then I found out my candles were super toxic to me, in addition to so many more of the products I’d previously used. Because so much of your life changes, those little things start to mean so much to you. Anything you can hold onto that feels like your former self, becomes even more important.
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How to support others going through a health journey.
Samantha:
Everyone reacts and absorbs information differently, and you have to do what you can in your own way. My way of processing and being supportive was doing what I do best: jumping into action and finding solutions. But my mom, for instance, is the kind of person who’s always by your side. We all have our own strengths and support styles. I think ultimately doing what you can, trying to make things better for them, and staying in a positive space is crucial.
Ashley:
For me, I think it’s really helpful to know your loved ones are there for you—but it’s also important to not always talk about your illness. It means so much to me when my family can make jokes, laugh with me, and have fun. The small things—like asking if you need food or a coffee—can also mean so much.
On a separate note, for anyone out there who is experiencing confusing symptoms: have your blood checked, get your routine checkups, and don’t take no for an answer.
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