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ITP Conference, Tuition, Copays

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My name is John Phillips. I am 17. I have an auto-immune disease called I.T.P. That stands for Idiopathic Thrombocytopenic Purpurra. My platelets, which help my blood clot, are constantly under attack by my own body. I was diagnosed on my 17th birthday 6 months ago, but I suffered from its symptoms for a couple months before that. I had huge bruises all over my body and what looked like polka dots under my skin; they are called Petichiae. I was coughing up blood as well. I went to the doctor and I had blood work done. Later I got a phone call that my platelets were at a critical level and I had to go to the ER immediately. After I was diagnosed, I was admitted to the hospital and had I.V. treatment. Whenever I get that treatment, I have a horrible headache for a couple of days and get sick to my stomach. My platelet level was boosted for a week or two, and then dropped right back down. The side effects are not worth the temporary increase in platelets. I was then put on a type of steroid called Prednisone, hoping that the side effects would be much better than IVIG. In fact, the side effects of Prednisone were much worse.

The last few months of Junior year were terrible because of the Prednisone. I was set off by the most trivial things and my stomach transformed into a bottomless pit. At home, my hunger took over. I would eat all night until I went to sleep. Then, I would wake up at 2 or 3 in the morning and not be able to go back to sleep. I didn’t have the energy to do anything besides lay around and eat. These poor habits caused me to gain 18 pounds in a month. I still have stretch marks from it and still experience bouts of Roid Rage.

Taking Prednisone was a wake up call. The unsightly stretch marks all over my body and the weight I gained really affected me. I care about my body and what goes into it now. I’ve also been working out on a regular basis. I am going to physical therapy for intermittent hip pain. I do my stretching and exercises regularly. Since I got off Prednisone, I have lost 13 pounds and have developed into a more empathetic and mature man. The self control that I’ve developed while resisting the urge to eat all the time has given me much greater patience. 

Prednisone also influenced my decision to become a hematologist. I always wanted to be a doctor, but I wasn't sure what field I wanted to specialize in. After my experience with ITP, I’m driven to help other people with the roller coaster ride that is this autoimmune disease and the journey to find the right treatment. A treatment that doesn’t have so many terrible side effects. I also hope to find, or aid in finding, a cure for autoimmune diseases. I went to a conference to learn more about mine and I am starting an I.T.P. support group for people in Northern California. The conference helped me feel like part of a group and I knew I would always have someone to turn to for information and support. I was also able to take in the sights in LA and visit the Minions at Universal Studios. You can see in the picture how overweight I became after the steroids, but I still tried to find ways to get out and take my mind off of my disease. After what I’ve gone through with I.T.P., it would mean the world to me to help people going through the same thing.

Despite all of my problems, I have continued to do well in school. I have been part of the Coordinated School Health Program Advisory Committee since I was a Freshman. I have volunteered at Project RIDE, where people with disabilites have therapeutic horseback rides. I am on the Link Crew at school to help Freshman with the transition to high school. I made posters for the blood drive at school to raise awareness for ITP and the need for platelet donations. I helped clean up my school campus on a recent Saturday. I am truly living life now and giving back to my community. I have joined several clubs at school. Instead of doing less, I am doing more.

I am requesting funds for several things. I would like to attend a Youth Forum on Medicine this coming summer. This will help me in my journey to become a doctor.  I have an opportunity to go on a school trip to England over the summer. I want to broaden my horizons and learn more about the world. I also want to raise money for my future medical bills. My parents have been paying a lot of copays for all of my appointments and labs. I will need a platelet transfusion and IVIG treatment before any medical or dental treatment that may cause bleeding. I anticipate many medical bills in my future. I want to get a job to help them with all of these expenses, but my parents want me to focus on school. Finally, I want to give some money back to the organization that has helped me so much.  PDSA.org has information, resources, and support for people with ITP. It is a non-profit organization that helps change the lives of people with ITP. I will donate a portion of the funds raised to help them in their efforts. I appreciate everyone who reads my story. If you cannot donate, then please consider donating blood or platelets to help save lives.
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    • $500
    • 10 yrs
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Organizador

Dawn Cave Phillips
Organizador
Elk Grove, CA

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