Chapter one: diagnosis
A medical condition in which the ability of the blood to clot is severely reduced, causing the sufferer to bleed severely from even a slight injury. The condition is typically caused by a hereditary lack of coagulation factor, most often factor VIII.
Treatment can help, but this condition can't be cured
Requires a medical diagnosis
Lab tests or imaging always required
Chronic: can last for years or be lifelong.
That is what will pop up when you google haemophilia.
Hi my name is Willow Fay. I'm 19 years old and was diagnosed with haemophilia when I was ten.
I was playing around outside when I fell and scraped my knee. At first I didn't even feel it but then my mother started freaking out because the scrape on my knee wouldn't stop bleeding.
It bled so much that it started soaking into the socks that I was wearing.
After that my mother took me to the emergency room. There I met Dr Jamie who I would later be seeing basically every week for check-ups. He examined me and from there we went to do tests. A whole bunch of them.
Blood tests that are used to determine if the blood is clotting properly are called screening tests. Types of screening tests are complete blood count (CBC), activated partial thromboplastin time (APTT) test, prothrombin time (PT) test, and fibrinogen test.
It took a few days to get the results but once we got called in my life changed forever.
→Weekly doctors appointments.
→Medication that ups my blood count.
→Medication that helps my white bloodsels heal the excessive bruisers that I get very easily. Like you could literally just grab my wrist and in a few hours it would be a black-blue.
→Weekly appointments to do blood transfusions to make sure my blood is clotting right.
→If I by accidently cut myself even just slightly, I have to go to the hospital immediately or else I could bleed to death. From a little cut. That means more transfusions and upping my dosage of pills.
The first few months were terrible for me and my parents. They constantly had to watch me.
At first the bruising was really scary. My whole family were afraid to even touch me. They were afraid I'd break if they did. So they became extremely protective. They didn't even want me to go to school. So I didn't. My mom quit her job and started homeschooling me.
No more middle school. No highschool.No more friends. No more playing outside. No more helping mom in the kitchen. No more doing art projects. No nothing.
As the years went by they got better. I even met a few people my age from the local library where I frequented. My dad let me hang out with my friends but made sure that it was always at my house. So that if something happened my mom was there to take me to the hospital.
Every Monday I went to the hospital for my weekly transfusion and then stayed at home the whole day. It always tired me out.
I have to take iron tablets and blood thinners every day to make sure that my blood clots normally.
After I "graduated" (from homeschooling) me and my parents had a very serious talk about college.
I missed out on my whole life and I was tired if it. I wanted to be normal. I wanted to be 'Willow Fay' again not 'the girl with the blood disease'.
I wanted to make real friends and meet cute boys like in the movies that I watched non stop. I wanted to be normal.
After basically begging on my hands and knees to go to college, my parents allowed it. So I applied at Drake College. It was litteraly in walking distance from my house (not that my parents would ever let me walk there), and it had all the classes I wanted.
I want to go into business. I've always had a knack for business and studying. Plus my dad is the CEO of his company called "Fay Inc." and u plan on taking over for him once I've done my four year course. I plan on studying business and economics.
My mom always thought I'd be a doctor but since I'm so sick of hospitals i just couldn't do it. No matter how much I know the hospital like the back of my hand I couldn't actually work there.
So business it is.
My dad was ecstatic when I told him about my future plans and to tell you the truth, so was I.
I was starting on a new page. No more disease girl. Just Willow Fay. Just me and my nurdy looking self.
I don't plan on telling anyone about my disease and my parents except my decision. They understand that I don't want to be treated like a disease or someone with a disease. I just want to live my life for as long as I can and as happy as I can.