My Story:


Ella-Rose  – Auckland PID Member

Congratulations to Ella-Rose for winning the 2015 writing competition. Her story about how she has grown up with Hypogammaglobulinemia is very well written and interesting. She won a Whitcoulls voucher and her story is published here to inspire others living with similar conditions to keep going despite the pain or sickness they are living with. Well done Ella-Rose and keep inspiring others with your story.

You Shouldn’t Let Something You Can’t Control, Control You.

By Ella-Rose , 15.

School. Drama. Music. Singing. Weekends. Friends. That’s what I define my life as and what I let my life define me as. Hypogammaglobulanema (Primary Immunodeficiency) comes under the ‘homework’ section of my life. Something I have to deal with and adjust to, and something that has to be done, just like actual homework. It’s important, but it’s not who I am. Every six days however I am reminded of this ‘homework’, with my routine of setting up my blood products. I then find a quiet space in the house and put a butterfly needle in my stomach. Following that I usually sit for the next hour while my pump does its thing and do homework, watch TV, sometimes have dinner or on a rare occasion go out. I suppose this is what I like to think my life is. It’s an occasional reminder every six days. Sadly I know this is not exactly true. I have doctor appointments, with about every specialist you can name. Blood tests. Operations. Then there are the conditions that come off this umbrella term of ‘Immunodeficiency’. Sick days, hospital days, days off school. Fed up days. All of these happen on a regular basis, but so do my days with friends, days at school, days at the movies or days spent out shopping. I just have to fit in the other, not so happy days.

I get sick a lot, more than an average teenager. However due to Evogam, my blood products, which are kindly donated by many New Zealanders, I am able to stay relatively well throughout the year. Without Evogam normal teenage things would be hard. I wouldn’t be able to have sleepovers, go out as much or do as much at school, let alone be at school. One thing that has truly shaped me was going on a school camp at the end of last year. I was able to go on a five-day sea kayaking camp with my friends from school. Sleeping in a hut and in tents. Kayaking in rain and wet weather. One of the most amazing experiences of my life and one I didn’t come home from sick. Another reason this camp was so special to me was that the previous year, 2013, I had spinal surgery to correct my scoliosis. This, however, is completely unrelated to my immunodeficiency and was pretty much just bad luck (and bad genes). I never thought I’d be able to do so much after the surgery, but nothing medical has every defined me before, so I wasn’t going to let a few rods and a handful of screws do that…and no I don’t set off the metal detectors at the airport!

One great thing about Evogam is that I can take it wherever I go, visiting family overseas, or going on holiday. It can be packaged up in our blue chili bin and taken with us. Something that I am truly looking forward to is a trip overseas next year. I have never been overseas with Evogam without my family before, but next year I am going to be taking it across the world on a school trip. Something that would never be possible without all the plasma donors who give up their time to give people like me and my brother as normal a life as possible. After all what is normal? This is my normal, it’s the normal I live my live by.

I think it’s important to remember that you shouldn’t let something you can’t control, control you. It’s hard sometimes but no matter what I do I don’t rely on any of my medical conditions or let them stop me. One of my favourite quotes is “Everyone you meet is fighting a battle you know nothing about, be kind always”. Most of my friends look at me and see me, Ella-Rose and would not be aware of everything else.