INTRODUCTION AND BIO

Hello everyone, my name is Tiffany or Tiff as most call me. I am a 30 year old female who is legally blind or so called visually impaired. I was born with a rare eye condition called SPORADIC ANIRIDIA, this means that sometime right after I was conceived some type of mutation happenned in my genes which caused me to be born with no irises, or the colored part of the eye. Aniridics have beautiful black eyes like when a newborn is born and you see no eye color, that is what an Aniridic lives with their enire life. Sporadic means that I did not inherit this from any family member and now my children will have a 50% chance of getting it from me. There is something called FAMILIAL ANIRIDIA, and if my child is born with Aniridia they will have this type instead because they inherited it from me. There are a lot of things that cause someone with Aniridia bad vision, which include: glaucoma, stem cell defiency, cornea erosion, tightly stretched retina, bright lights and many more. The symptoms and complications from Aniridia can be controlled by many meeds and procedures. Someone with Aniridia has vision ranging all over, but most Aniridics have vision between 20/200 - 20/600. In the early years up until the child is 13 years of age their kidneys will be scanned for a tumor called WILMS TUMOR. If the child does have this, then they are put into the WAGR SYNDROME category. In very rare and I stress very rare cases has anyone older than 15 especially an adult Aniridic been found to have a wilms tumor.

When I was born, I was diagnosed right away within a few days. The doctors always told my parents that I would not be able to go to a public school, and that I would have to go to a blind school. My parents said no way and they raised me like any other child, like nothing was wrong with me. I never met another person with a vision problem till I was 17. I had a vision teacher come into my school everyday for an hour the whole 12 years of school I went. The V teacher would do such things as help with homework and I would do my test with them, they would read it to me and I would write the answers. Also any notes or other things that needed enlarged, they would do. I went through all grades and was not held back once. In high school I participated in all kinds of groups, clubs, and sports. I was always in sports, soccer, and basketball. In my senior year of high school I took drivers Ed. It was a first for the school and the school system, so it took a little pushing to get in the class. The teacher for drivers Ed was an older gentleman and he told the school he was brave enough to take me out on the driving part LOL. he actually said I drove better than some of the other students and I passed drivers Ed with an A. I tried out for the high school track and field team and a lot said I would not make it, but I did. Once on the team I blossomed from a good athlete into an awesome athlete. The team supported me and helped me if I needed it and the coaches were the same way. The summer before my senior year I attended a leadership camp for a week because I had been nominated to go. I had taken all of my track stuff with me so that I could practice when I found out they had a big track on campus. This was in 1996, while practicing the shot put I noticed this guy watching me forever. I went to take a break and he came up to me and asked how long and where I throw etc. I told him and low and behold he was the Olympic throwing coach and the USA team was being housed there for practice for the 1996 Atlanta Olympics. He invited me out to training camp with them for two weeks that winter in Colorado Springs, CO at the Olympic training center. Also that week at leadership camp my peers or the other campers voted me as the leader of the week. With this honor at the end of the week I received a plaque from the state senator in person and did a speech at the ending banquet. I also received an all expense paid trip to Huntsville, AL for national leadership camp at space camp for a week. That fall I took a week off my senior year to go to space camp and that was an awesome week with lots learned and many memories. At space camp I received another plaque and medal because everyone there campers and staff voted me leader of the week. That winter Is when I took off the week from school to go train at the Olympic training center. Again unforgettable. What I did not know is I was entered in a indoor national meet, I was nervous but I came back home with tons of medals and a national record that still stands. This is where my Olympic career was launched in track and field. I graduated high school in the top 50% of around 600 students.

I went straight into college that fall away from home. I was so ready to get out of the house and on my own and that is because my parents raised me independent and never handed me anything. I loved computers and was told by some I could not get a career in that. Well when I am told I can't I go and do it. So in 2000 I graduated from college with a degree in computer graphics and printing, this was only 3 years after I graduated high school.

Throughout this time I was traveling and competing to qualify for the games in Sydney , Australia. I came in first on the state level and qualified for junior olympics, then there I squeezed in third to be eligible. I made the qualifying distance in the shot at a meet in San Diego, CA. I went to the games in Sydney, Australia and came home empty handed, but that is fine the trip, the games, the athletes, the experience, the memories is a dream come true for me. I hurt my back the year after that so competing was over for me. I did go to the games in Athens, Greece because that was a true dream because that is the first place they ever performed the games and I worked in the Olympic village with my fellow athletes, but did not compete because of injury.

Up until 2005 the only problem with my eyes that I had was at 3 months old they had to go in and straighten one of my eyes because the muscle was a bit weak, and that was in 1979. My vision was always pretty good, it was not the best but I could see 20/200 and what that means is, if there is an apple sitting on a table, if you have perfect vision you can see that apple at 200 feet, whereas I can only see it at 20. I can see colors fine, shapes fine, my vision is normal in a sense just not as good as others. That goes for most Aniridics, they are not color blind, we see everything you do just not as good.

In 2005 I had to have a stem cell transplant because just like all Aniridics my stem cells had died off so much that they were not replenishing themselves, thus called stem cell deficiency. You have to take all the rejection meeds as if you were having a kidney transplant, so I did so. The transplant went well and I did have bout of rejection which Anirics are a high risk to reject even with the meds. My body finally accepted the new stem cells and my vision got much clearer. For those parents or even young adults the symptoms of the stem cells eroding the cornea would be if you or the child rubs the eyes constantly, complains of eye pain such as something is in it all the time and blurred vision. At the time that I had the stem cell transplant I had been working at the Marriott As a banquet server doing weddings and class reunions etc. For 2 years. I applied online and was called in for a mass interview with tons of other people. In my interview I did not relay to the woman that I had a vision problem and I did awesome in the question part, but surprise I had to set a fancy banquet table identical to the one she had. The nerves set in then, I had 5 minutes to do it and no experience. I started and got one place setting down and she told me to stop. I knew I had screwed up and was done for. She told me to sit in front of the setting and she asked which door the applicants before me went out and I told her and she said well your going out that door to human resources, I bout fainted. She showed me why I was the only one hired on the spot that day. The ends of the utensils were slightly separated and I caught that. Of coarse the first day of work when they wanted me to carry this huge tray full of coffee through tables I had to let the cat out the bag and she was shocked that I was, but with lots of practice I was carrying that big tray of coffee and big trays of food with no problem through crowded tables.
After my stem cell transplant I was unable to work there anymore because I felt it would be risky to me and others with my vision getting worse. I left on good terms and they want me back soon

Shortly after a stem cell transplant, usually within a few years an Aniridic will have to have a cornea transplant or a replacement/stem cell transplant again. I went the route of a human cornea transplant. I had this done in spring of 2007 and less than a week the transplanted cornea, my body rejected it with vengeance. Again Aniridics are at a higher risk to reject new tissue to their body, but this did not stop me. Their was a new procedure that does not involve any rejection meds or any rejection of the tissue and I was willing to go for it since there was no need to try again on a human cornea. In the summer of 2007 I had an artificial cornea or k-pro put in my eye. You would not believe the world that I see now, it is so much clearer, my vision is better and I even got an added bonus which is my natural eye color I would have been born with. It is a very pretty blue, which right now there is a study being done and 100% of patients with Aniridia would have been born with blue eyes. The following spring of 2008 I had the same thing done in the other eye with the k-pro. The great thing about the k-pro is that you do not have to endure the stem cell transplant at all or the rejection meds beforehand and can go straight into the surgery whereas if you choose to go with the human cornea you will have to have a steno cell transplant first along with all the rejection meds. Between 2008 and 2010 I have had a few problems as far as high pressure in only one of my eyes but it is now under control with two tubes in my eye. With the k-pro as of summer of 2010 they can't check the pressure in your eyes except by feel and the person with the k-pros also needs to know what high pressure feels like and a trusting doctor that will not blow them off when they complain. High pressure or glaucoma is a very serious condition and can cause permanent damage and needs prompt attention.

Now that my vision is all settled down for a few and no upcoming surgeries in the hoizon, I have been wanting for the longest to take the certified nursing coarse. So this summer that is what I am doing for 5 weeks. 3 weeks in the classroom and 2 weeks in clinicals. I was told not once, not twice, but many times I would not be able to do this because I can't see good and I am legally blind. There are going to be challenges and there are going to be walls I have to climb, but I will come out on top. I want to thank all those out there that tell us we can't, because you are our motivation to do it. Enjoy my journey to becoming a certified nurse assistant. Thanks for reading my blog and I hope you enjoy it and it is informative and educational. Feel free to contact me at eliteangel33@yahoo.com with any questions :0)