ITP Warrior - John


A tenacious, young warrior right-sides his world after a shocking diagnosis turned it upside down.

My diagnosis of ITP was very shocking.  It turned my life upside down.  I had to learn about a disease I had never heard of before and change my lifestyle completely.  I had to deal with terrible symptoms from medication.  I could have just given up and taken the easy route, but I decided to use my experience to make a difference in the world.

As a high school student, I was involved in typical activities.  I took AP classes, wrestled, did community service, and played video games.  After my diagnosis, I had to focus on my classes and my health, but I gradually started doing more, and now I am involved with more activities than before my disease started.  It has been extremely tough at times.  I have struggled, but I am slowly becoming a much better person. 

I grew up very quickly and learned what is truly important in life.  Some teenagers only care about Facebook and gossip.  I was self-centered sometimes and not always sensitive to other’s feelings before my diagnosis.  I decided to learn as much as possible about my disease and try to meet people with ITP.  Now I think about my actions and go out of my way to assist others and try my best not to hurt other’s feelings.  I joined clubs, Link Crew, took a Phlebotomy class, and I am truly changed for the better.

Steroids and IVIG, common treatments for ITP also changed me in several ways.  When I was treated with prednisone for a month, I was a completely different person.  I experienced severe insomnia and “roid rage.”  Every day was a struggle to keep my inexplicable anger suppressed and prevent myself from harming those around me.  It was beyond horrible to have a caveman controlling my mind.  I woke up at 2 am every morning and was unable to return to sleep.  I was driven insane by not being able to do much besides star at the wall with nothing to do, because I had already finished my homework.  Suffering from extreme fatigue made staying awake and performing well during school even more difficult to accomplish.  I still suffer from periods of brain fog and fatigue, which is frustrating because I have to work so hard just to catch up with everyone else in my harder classes.  It’s difficult to stay motivated sometimes, so I remember that the best way I can help people is to become a hematologist so I can help people through the hell that is an autoimmune disease and finding the proper treatment.  I could make the difference for and provide support for someone newly diagnosed better than a regular hematologist, because I have had personal experience with this.  A lot of doctors lack genuine empathy for their patients, but knowing what they have gone through, I could be there for them and make them feel like an equal instead of a number.  If I can be the one person that makes people feel comfortable, then I am going to push through and finish medical school, no matter how hard.  I can be more than someone’s doctor, I can be their friend.  The challenge of medical school is worth it to make my patients happier and healthier.

I have been active in the community, serving various organizations and spend my spare time spreading awareness about ITP.  I have presented at the school district office, community groups, and attended events.  I help the local blood bank by attending blood drives and thanking donors.  I have raffled off items that are important to me from my wish that was granted with the SF 49-ers, to encourage participation at my junior college.  After being inspired by those I met at the 2014 ITP Conference, my mother and I started a support group.  The group has been a wonderful source of information and has given me a feeling of belonging.  Without PDSA helping me, I would feel very alone.  I never would have met as many people with ITP and would not be able to see what other people are going through.  I would not be as active as I am in my community.  I am honored by the support I have received from the community as well.  A local motorcycle group started donating blood in my name and created a donor number for me.  I have had over 200 people donate blood in my name.  I have truly made a difference and plan to make an even bigger one.  I believe I have touched people’s hearts and inspired them to continue to help save lives.  I am driven to succeed and make a difference in the world, I will continue to do my best to make the lives of people with ITP easier and spread awareness.  I don’t care when or if my ITP will go away, because I will stay strong no matter what happens.

 

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