Living with Histiocytosis

By now it's no secret that I am very involved with the "Histio Family" in honor of my best friend's son. As a result of my involvement, I have "met" many warriors.

One such warrior is 9 year old Taylor. She has ND CNS LCH, or Neuro-degenerative Central Nervous System Langerhans Cell Histiocytosis. What this means is that the LCH is attacking her central nervous system (think brain and spinal cord) and breaking it down. Because of this she also has Diabetes Insipidus, or DI. DI occurs when LCH attacks the pituitary gland causing the body to not be able to absorb water properly. Because of her illness, Taylor will always be on medications. She will always worry about the LCH flaring up again. She is currently receiving chemo therapies which not only make her ill, but also make her very susceptible to other illnesses and infections. While on chemo, she has to worry about the slightest fever. Even a low fever, that you and I might ignore, could mean a hospital admission for Taylor.

When asked if she wanted to share with others about her illnesses, she jumped at the chance. After receiving permission from both Taylor and her mom, I am sharing this because I think the world needs to hear it.

"My mom asked me if I wanted to try to talk about histiocytosis & tell people my story & I said yes. I want to tell people about Histiocytosis because if I tell people I have it they don't even know what it is. Alot of times they say that I look fine & don't look sick but I don't always feel fine inside. I know what it feels like to have histiocytosis & alot of the time it hurts. I have to have chemotherapy & I get really tired, I get bad mouth sores from chemo & then if I am hungry I can't eat, I get headaches, my belly hurts, I get alot of muscle cramps & I even throw up sometimes. I had to go to the hospital alot of times because I got sick with a fever. But the worst part is I can't do things with my friends or play soccer during chemo week & sometimes even when I don't have chemo because I just don't feel good. Sometimes I am afraid to go to sleep because I am afraid I am going to die. Dr. V tells me that I am going to be ok & I really love her for taking care of me. Even when I feel really bad I always try to keep smiling, I know that everyone worries about me & when I smile they smile. I know that histio is rare so that means alot of people don't have it but it doesn't mean that kids like me with histio don't matter. I really want to teach everyone about histio & help Dr. V find a cure so that it goes away & never comes back."

Wow. "I know that histio is rare so that means alot of people don't have it but it doesn't mean that kids like me with histio don't matter." You may wonder where she's gotten the idea that people think kids (and adults!) with Histio don't matter. To find the answer, you don't have to look any further than our government. Researchers are consistently denied grants and funding because Histiocytosis doesn't affect enough people. Instead the money goes to heart disease, diabetes, or childhood obesity. Don't get me wrong, those are important causes too, but do they really have to get ALL of the money?

And what about this part? "Sometimes I am afraid to go to sleep because I am afraid I am going to die." If this doesn't bring tears to your eyes, well, you just might not have a heart. Taylor is NINE. Just nine. For a nine year old, to be too scared to sleep, not because of monsters or the boogie man, but because she's afraid her disease is going to KILL her, well, it just breaks my heart.

So, now that I've tugged at your heart a little, you want to know what you can do. You can start by learning more at www.histio.org You can donate to research on that site as well. And, perhaps most importantly, you can spread the word. As a wise adult with LCH says "Make Histio AWARE, not RARE."