Sharing an Allergy with Only 0.6 Percent of the World

This is my story, my story about going through reactions after reactions, over and over, for two years straight, countless doctors appointments, and no answers. Until we turned to our own research and figured out what all my doctors couldn't. But, in order to tell this story, we have to start from the very beginning.

July/August 2016

I was attending a cheerleading camp (the NCA) that was being held at my school's gym for my team. I was the head flyer, and the only tumbler on the team, as well as the most flexible. I was extremely dedicated to this team. I would practice for hours at home after each practice. All of my jumps were hyper extended, and I constantly pushed myself to do the best to my ability. I loved the sport with my entire heart. After the camp ended, we immediately started practicing for the first day of school rally. While we were warming up, we decided to do jumps. This day, my legs went a lot more hyper extended than usual while I did my toe-touch. So, of course, my knee was sore. We thought it was a pulled muscle, so my coach told me to take a week break and be careful on it. Little did we know it would get much worse.

Side Note

I have this thing called Ehlers-Danlos Syndrome, or, EDS for short. There are many different types, but the type I have affects my joints. You see, all of my joints are naturally hyper extended, which make me extremely flexible, but, it also means my ligaments are a lot more loose, and I don't have as much collagen as "normal" people. It also means that I am a lot more susceptible to injuries (i.e. dislocating joints, which, happened a lot). Although, no matter how many times I got hurt, I always got over it and kept moving because it never really hurt. Which is also another thing that came with my EDS, I was more immune to pain.

September 2016—First Game of the Season

It was the first game of the season. Everybody was pumped up and excited, not only because it was the first game, but because we were also playing against our school's rival. All of us cheerleaders wanted to help pump up the crowd at halftime because it was currently a tie game. We rocked out performance and as we were rallying off the field, I thought it would be cool to do a back tuck, so, I went for it. But, when I landed, my right leg went down too fast, and hyperextended, which causes a loud pop and my knee to subluxate. It didn't hurt, but, it w as tight. And, every time I tried to walk, it would subluxate. We were scared, so my mom rushed my to the hospital immediately, to which the doctor said my knee was in place and it was fine.

That night, my friend and I went to the fair, where my knee was still subluxating, but it also never hurt once. After a few days, the swelling still never went down, and the bruising was getting worse, so, we went to the doctor who ended up ordering an MRI. A month later, we found out I had no ACL and two meniscus tears. All the doctors said I shouldn't have been able to walk on it. But, I was still cheering every single day from the time it happened, up until surgery day. My surgery ended up lasting an entire hour longer because I ended up having 4 meniscus tears due to the fact that I was still cheering. It never hurt.

Recovery

Within less that a week, I was already bending my knee at 90 degrees with the CPM machine, and I wasn't taking any pain medication. It still never hurt. I was prescribed Sulfa as an anti-biotic, and after the last day taking it, I woke up with a rash from head to toe. Not a normal rash. A blistering red, leopard like rash. Bubbles were on parts on my skin, my eyes were bloodshot, I was sick and vomiting, and covered in every inch of my body. We had no idea what was happening. When we went to the hospital we found out I had Steven-Johnson's Syndrome, a rare allergic reaction to Sulfa.

Fast forward to 2017, I was going through some hard times, which caused me to quit sports, and stay on home school, but, that's a story for another time. Anyways, I was having extreme stomach problems and could barely move, or eat without my stomach burning. We went to the hospital to be diagnosed with bleeding ulcers, that we thought were caused by the stress I was going through. We were wrong.

A few months later, my family and I moved to Oregon. Everything was going fine, until I began getting these weird horrible rashes all over my face. Except, they were more than rashes. They looked like acne in some spots, but they weren't acne. The corners of my lips were split open, oozing these weird liquids, all my skin was peeling, and there were huge red circles of scab like skin. My lips itself were swollen, and oozing. My eyes were huge. So huge, I couldn't look up or down. They were bright red, and itching, as well as scabbing and oozing. It went on line this for months. From September to April to be exact.

Every time we went to the doctors, they said it was Impetigo, but all the medication they were giving me just made it worse. Then, they tested it, and, the results showed it was Impetigo. We were stuck for months, and I was forced to take the only medication that would make my face problems go away—Prednisone. I was on this steroid medication for months. A 16/17 year old girl. Every time it went away, I would stop taking it, just to have to take it again because my reactions would show up the next day. It was a never ending cycle. It was like a living nightmare. I remember waking up in the middle of the night itching my eyes, or my neck, or my lips, and feeling them ooze. I would NEVER wish what I experienced on ANYBODY, ever.

2018

It began getting to the point to where I wouldn't leave the house. My self confidence was down the drain. I was loosing hope in ever getting better. I couldn't see it ending. Until, one day, my mom was researching everything she could online. Then, she came across this diagnosis website. It was asking these questions about Sulfa reactions after surgery with a screw being implanted. Which got my mom to research the inter web even more. Then, she found it. I was allergic to my titanium screw that was in my knee. Every single thing added up. The stomach issues, the Sulfa reaction, the face breakouts to all my makeup with titanium dioxide in it, my reaction to hair vitamins that contained titanium dioxide.

None of the doctors believed us. We spent money on the allergist for patch testing, just for them to say I wasn't allergic to anything, but I was having contact dermatitis, and that it wasn't possible to be allergic to titanium, nor my screw. For, titanium allergy is so rare that it can't even be tested for in the US. So, we taped a titanium screw to my arm, and within a few days, I was having reactions.

Finally, the doctors were actually starting to believe us. We began making appointments with an Orthopedic doctor, and he agreed to do the surgery to take the screw out. The morning of the surgery, I was having another reaction. Everybody said to not expect to see it go down immediately, as it would seem impossible. But, when I got home, that night, my face was already better. Within a week, the reaction was gone. Within a few months, I was able to use any titanium dioxide product I would use before (i.e. makeup, sunscreen, vitamins, etc.). The doctors were all blown away. My surgeon said that in his 32 years of surgery, he's never seen anything like it. He told us that when we cut into my knee, my bone was actually eroded around the screw, due to an internal reaction.

That all happened in April. It is now October, and I am 100% back to normal, as if it never happened. But, every now and then I go back to those times and think about how thankful I am to have found out what happened and to have gotten through it. All thanks to my momma. I am currently able to do almost anything I was able to do before any of this ever happened too.

Now, I can't get any titanium screw if I ever need surgery again, which may be tricky seeing as though I have an MRI this week for my other knee.