Welcome Model/Athlete: Jessica Nicole Spillers Weaver

Welcome Model/Athlete: Jessica Nicole Spillers Weaver

Welcome to the #HemoLife Team!

 

Hello! My name is Jessica Nicole Spillers (Weaver.) I'm 22 years old and have Hemophilia A. I am a child of adoption and know little about my birth family, especially on my father's side. As a young child I was very frail, sickly and bruised quite easily. At the the time I was going to a children's hospital frequently for underlying problems and my mother questioned the specialists about the bruising. The doctors made their own assumptions and never ordered tests. Life went on like normal and I was a happy but "frail." child who enjoyed the same things every other kid did but I was just "delicate."
Years go by and at 16 years old I met with more doctors regarding my bleeding and I was told it was hormonal and it would resolve itself, "I shouldn't worry." but every month I would pass out from bleeding episodes due to a natural occurrence in young women who are becoming of age. Once again no tests even when I insisted I knew something was wrong. Other girls I knew didn't experience any of these symptoms but I had no answers so these episodes became "my normal."

All throughout high school I was in and out of hospitals, prescribed pain pills and told to just rest. "It would get better." While in high school I was involved in athletics and never noticed anything out of the "my ordinary." I wasn't easy on my body and pushed my limits one to many times. This resulted in injuries and I noticed my recovery time always took longer than what it should but once I was healed up I went back to being the same athlete I was before. This lasted about 8 years.

As my senior year of high school rolled around and I was gearing up for graduation my symptoms became dramatically worse. One morning I woke up in a panic, I was unbelievable weak bruises covered my limbs and my whole body just hurt. Alarmed I go to my mom, who calls our doctor and he immediately works us in. Once examining me he holds my hands and says the words that changed my life forever, "I'm sending you to a hematologist, we need to run some tests." He didn't have to say that he was afraid I could see it written all over him.

A few weeks go by and I meet with my new doctor who takes a plethora of labs and reassures me that I'm going to be okay and to be patient. When I got the calls the labs were in I was two months from graduation. I eagerly sat in her office waiting for my name to be called, and once it was I was not prepared for the outcome. She came into my room with both me and mom present and she sat down in front of me simply asked "Who is your father?."

I couldn't answer. But instead I just shook my head and that's when my mom spoke for me. She caught my doctor up on the story of my birth family and how we had little knowledge of medical history. She nodded and said "Jessica the tests revealed you have Hemophilia A, your factor 8 deficient and it came from your father." She went into more detail about the condition that I spaced on out of shock. The next thing I heard was I'm sending you to a specialist in Indianapolis. I asked what about sports? I was an athlete. I trained myself day in and day out. She ordered me to stop immediately because my body was to fragile. Instant tears. My whole life changed over a matter of minutes. But it felt so relieving to finally have answers! Over the next couple of months I went back and forth to HTC in Indy and met with more doctors who were in awe of my diagnosis. Why? Because Hemophilia is "Male." disorder!

Eureka! This is why my condition was missed for so many years. Since my diagnosis at 18 I've been admitted to the hospital for internal bleeds, joint bleeds, not being able to stop bleeding from my menstrual cycle, Colo-rectal bleeds, and various other bleeding related complications. One of which put me in the ICU in an Indianapolis hospital for a week, resulting from a simple appendectomy. Hemophilia changed my life. Upon first diagnosis it put me into a depression, I felt like everything had been taken from me. I didn't like the way I was or what Hemophilia did to me. I didn't like the treatment. I didn't like being poked and prodded with needles. I didn't like hospitals. Very slowly (about a year and a half) but surely I came to terms with my diagnosis and it is now a battle that I fight every single day. There are still days where I feel like Hemophilia makes all my decisions for me but, that is something I continue to fight because I'm not a prisoner to my condition. I went 18 years before being diagnosed and made it through now at 22 years old I refuse to accept anything less.

 

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