Jessica's Story

My name is Jessica Leopard Camp and I am 23 years old.  I am married to Matt Camp and we reside in Prattsville with our three and two year old daughters, Kameran and Makenlie.  This past summer, I was diagnosed with a rare disease called Langerhans Cell Histiocytosis or LCH.  It is a disorder that primarily affects children but is also found in adults of all ages. It is estimated that one in 200,000 children are diagnosed each year. The rarity of LCH in adults makes its incidence difficult to assess.   Although some forms of this disease were originally described over a century ago, it has only been recently that LCH has begun to receive more attention, especially in adults. People affected with LCH produce too many dendritic histiocytes; a form of white blood cell found in normal, healthy people and intended to protect the body from foreign materials and infection. In people with LCH, however, these cells multiply excessively and accumulate in certain areas of the body, causing various problems.  While most patients will survive the disease, some may develop life-long problems while others remain symptom free. In some cases, especially children, the disease unfortunately may run a progressive course and be life threatening.

My disease manifested in the form of extreme pain in my left chest and shoulder especially when I moved my arm or even breathed.  Fortunately, Dr. Highsmith continued investigating my complaints of pain in that area and ordered a CT scan of my chest.  The results showed a mass like deterioration of my fourth rib just under my left shoulder blade.  He immediately referred me to a Hematologist for a bone biopsy.  It came back positive for LCH. 

If this wasn’t scary enough for me, hearing the Hematologist had never seen this disease, as it is rare and was unsure of a treatment plan was startling. However, working with others in the Hematology Oncology field, my treatment plan has included chemo treatments over the past six months in hopes we can contain the disease.  I lost my hair, as with any chemo patient, that is a major emotional hurdle.  The sudden loss of my hair was scary to my three year old daughter, so my husband and I spent time working with her on seeing me with and without hair.  Some see it as a taking away of their identity and I did too up to a point.  Then I decided I am going to beat this, so what if I don’t have hair?  I am still me and this isn’t going to silence me at all.  It was very hard though to go into our local stores and have people stare at me.  It made me very uncomfortable.  But then a lady came up to me in Mad Butcher and said, “I know you saw me staring at you.  I’m sorry, I wasn’t staring to be mean, but admiring you and your strength at what you must be going through”.  From that day forward, the looks and stares haven’t bothered me. 

One of the things my Grandparents Harvey & Mildred Gilbert have shown me when faced with life altering illnesses is to never give up. I am now different in many ways, and while my bone is healing with chemo treatment, I still have this disease and am unsure where or how it will manifest next.  What we do know is that LCH is not contagious--patients did not catch it from anyone and cannot infect anyone else with the disease. Also, there is no information to suggest that the disease is hereditary.  

I would like to ask, as with any disease you pray for a cure.  I also want to thank those of you who have prayed for me and my family throughout this difficult journey.  Any of us, no matter the age, can be affected by a life altering illness.  Your strength through prayer is one of the best gifts you can give us.  Thank you!