My name is Talan Summers, and this is my story!
I was born 3 months premature weighing in at 2 lbs. 10 oz. I had to have a PDA heart surgery when I was two weeks old. (stapled up a hole) So now I have a massive long diagonal scar on my back.
I was in the hospital for 2 and a half months before I got to come home. As I was growing I would get the usual bronchitis and pneumonia that premature babies get, but nothing more unusual than that.
When I reached my grade school years, my mom started noticing me calling her often from school saying I was sick and to come and get me. She would ask me where I was sick and I just could not pin point it, I was just sick all over. My teachers thought I was just faking it, and I also had anxiety. Little did they know I was not faking. But this didnt stop me from still going to school and doing the things I liked to do, like playing sports. I liked to play baseball, football, basketball and I did pentathlons. I excelled in everything I did. My mom and dad tell me I have a natural athletic ability.
As I was approaching middle school I started to become more ill and had severe sinus infections that led me to have several sinus surgeries. But once again it did not stop me from doing the things I loved. I still played sports, and worked for my dad. When I was a freshman in high school I made the basketball team, and played football. I pushed myself through some rough times as I played my sports and I had kids and coaches that thought I was faking, or just sick all of the time. Once again, I still didnt let it stop me.
Amongst being busy playing sports, I received my Eagle Scout and loved doing things with my family when I was 15 years old. Going into my sophomore year in high school, I made the basketball team and played football. I noticed that my sickness was getting worse. My mom started to watch me closer and monitor my episodes of illness. I loved playing ball and being with my friends. My body started to tell me different, but I pushed myself through it and accomplished playing sophomore football, Jr. Varsity football, and Varsity in my soph year. I was even able to letter in football that year.
The summer going into my Jr. year I went to football camp for high school. The second day of practice I was doing drill and hit a kid so hard he about didnt get up, and as I got up I had severe pain in my lower back and down my right leg. I stayed at camp for the rest of the week but didnt participate the rest of the camp because of my injury. When I came home my parents took me to the Dr. and we found out that I had actually broke my lower back at L5 and S1. The Dr. put me into a turtle shell for three months to see if it would heal on its own, if not it would be surgery. I ended up in surgery with wire, and screws holding me together. I also have scoliosis with three curves. I did not end up going back to high school at my school, but community high because of my injury and my sickness started to really testify itself. I can tell you, this was not fun and it was a hard choice to make. But I still pushed through it and NEVER GAVE UP! My sickness would make me throw up, gain weight, lose weight, caused me to be very agitated, and the pain in my back and body were unbearable. Its so hard to explain.
I battled pain from my back surgery for a year and a half. The Dr. finally went in and took the hardware out. After a while my pain was still so severe that I about couldnt take it. My parents knew there was more wrong with me than just my back. This is when my mom really started to search for what was wrong with me.
After just over 8 years my mom thought maybe she had pinpointed it. I had been to so many Dr.s while we were trying to figure this out I cant even tell you how many I have seen. My parents even took me to the National Institutes of Health (NIH) and the Mayo clinic twice. My life has been one big trial, but I will NEVER GIVE UP!!! This is my motto, and I live by it every hour of the day.
Finally after being in so much pain my Dr. was able to get a pump put inside of my body to put meds in it to help me. I have numbing medicine in it that helps my pain.
When the Dr. put the pump in, it was supposed to be a short surgery and sent home that day. Well of course not with me. The Dr came out and told my parents that he had never seen tissue like that before, that it was hard as could be and I had strands like fishing line that he couldn't even cut, that he had to cauterize a hole for my pump. I was in misery!!! I ended up staying the night.
Long story short, my mom started piecing things together and we met with a Dr that finally listened to her. She had found a disease online that matched up with my symptoms. She brought it to his attention. He checked into it and I finally had a diagnosis. It is very rare and not one of my choice to have. It is called IGg4 systemic sclerosing disease. My Dr told me that he talked to his colleges at the Mayo clinic and they told him that they have only had 10 people come through there in the past 3 years. We have no idea if that is nationally or world wide?
My disease is turning my tissues hard from the inside out of my body. There is no cure! This is a very frustrating disease, and Dr.s don't know much about it and even really don't know how to treat it other than there are some chemo drugs to help symptoms and Ive had Rituxin and it didn't work for me. I have what we call terrible cycles, it includes water weight gain and then losing it fast, cognitively my brain is affected, throwing up, and my cortisol levels fluctuate. I also have a high eosinophil count in my blood and in my tissues. Obviously this disease will eventually take my life. But I will NEVER GIVE UP!!!! We are not sure what all is affected inside of my body other than we do know it is in my esophogus and all through the digestive tract into my small intestine, lungs from lower lobes to mid lobes and my lung function is at 60% and at moderate restriction. My legs, arms, flanks and abdomen are all hardening. My hope is to make people aware of this horrible disease and someday the Dr.s will be able to help or come up with a cure!!! My parents also think there is more to my sickness than just IGg4, maybe some kind of genetic problem?
