Wednesday, March 14, 2012

What I Know About Hemophilia: A 7-year-old's perspective


Hi! My name is Brandston and I have severe hemophilia A. I also have an inhibitor (an antibody to the meds). I hate having an inhibitor because I have to get more meds. My brother (who doesn't have an inhibitor) gets to infuse every other day, but I have to get infusions everyday and if I have a bleed, I get infused several times a day. When I get bleeds they take a long time to get better because the meds don't work very well, but if my brother gets a bleed it doesn't take as long to get better.

My mom and our nurses taught me how to mix meds and infuse myself. It looked easy, but it was not. It was a lot of listening and learning. I would like to learn everything there is to know about hemophilia.

My earliest memory of having hemophilia is last year when I had surgery to get my new port put in at Cardinal Glennon Children's Hospital in St. Louis. To make me fall asleep, they put some stuff that smelled good in containers and I got to pick one. I picked Root Beer. Then I blacked out. I didn't feel anything at all. That was my fourth port and it's as far back as I can remember. I forgot about my other surgeries because they were a long time ago.

I didn't really know what hemophilia was when I was little. I used to think the nurses were playing a joke on me. Now I understand that it is a bleeding disorder. When I was little, I felt bad about having it... not just for me, but for everyone else that has hemophilia, too. Hemophilia has a lot of pain. It might look like it doesn't hurt, but it does. Getting poked with a needle also hurts and I need to get poked to get my meds. Nothing has changed how I feel about hemophilia, because it still hurts to get my meds.

I hate infusing at home on school days because I have to wake up early and get my meds before school. It used to take about two hours, but now it only takes about 45 minutes. I still hate it though. Having hemophilia is not all bad. I love all the camps that I go to, like Camp Notaclotamongus (Missouri), Camp Wilderness (Missouri) and Camp Victory Junction (North Carolina). I love hemophilia camps because they are the only time I get to play rough (running, jumping...).

Having hemophilia makes me feel different from other kids because I don't get to do all the things that they do and I get bleeds often. I think there will be a cure, but not for a long time. If someone didn't know about hemophilia, I would tell them it is a bleeding disorder that I have and I get bleeds a lot and have to infuse everyday. I don't really care if my life stinks having hemophilia, but I don't want babies or other kids to have to get poked with needles.

13 comments:

Uncle Mike said...

Great job!!

Valinda said...

When my son was first diagnosed with hemophilia I came across a video of you. You'll never know how much it meant to me to see you talking about hemophilia and infusing. It made me feel like we're going to be ok and one day my son will be infusing and he'll be just fine like you. Thanks for sharing your perspective.

Grandma said...

Brandston this was very insightful and I am sure helpful to a lot of parents who are facing the same issues. You did a very good job! Grandma loves you!!!

Brandston Gould said...

Thanks Uncle Mike. That's nice of you to say.

Brandston Gould said...

Thanks Valinda. That's cool. I'm glad I could help you understand what's going on with him. It's kind of hard and it hurts a little bit. I wish that there was a cure so your son didn't have to go through what I am going through.

Brandston Gould said...

Thank you Grandma. That was a nice thing to say. I love you, too.

jguywrite said...

What an excellent writer, you are. Thanks for sharing your thoughts. I, too, hope they find a cure so kids won't have to get poked with needles.

Brandston Gould said...

Thanks jguywrite. My dad helps a little with spelling and grammar. He also gave me some questions to answer and then had me turn the answers into a story. It was a lot of work and I wanted to play, but I'm glad I did it because I wanted to help people learn more about hemophilia and I think it's cool that I got to meet other people (by comments, tweets...) and learn more about hemophilia myself. I also hope someone gives money to help find a cure.

Liliane Andrade said...

Brandston, I saw that you are a special person, you are only 7 years and you know all abaout hemophilia and I think that you will help a lot of people with this message.
I have a son, Felipe, he is 3 years old and he has hemophilia A too. He infuses factor twice a week to prevent bleeds but he is so happy and intelligent too.

I also hope that the medicine will find a cure.
Nice to meet you!!!

Liliane Andrade, Rio de Janeiro, Brasil.

Brandston Gould said...

Nice to meet you, too. Thanks for reading my post and saying those nice things. I wish that people didn't have hemophilia and wouldn't have to go through what I'm going through, so they could live a happy life. I'm glad Felipe is a happy boy though. Maybe I'll meet him someday.

Jill Bryar said...

brandston, thank you so much for posting this letter. I am a mom of a little boy who is 1 and has severe hemophilia A. It is so nice to be able to read what you go through and how you feel about it. I think it will help me understand what my little guy will hold in his future. Keep the posts coming!
thanks again,

Anonymous said...

Great Job Brandston, Thank u for posting this letter. My daughters have a bleeding disorder also. It is very important you make people aware of your disorder and you did a wonderful job. Keep up the good writing and HOPE someday there will be a cure for all of u that suffer from this. Maybe one day my little girl who is 8 will have the pleasure of meeting you at camp..Keep the posts coming! I try to educate her all the time !!! Keep FIGHTING for a CURE!!

Abdul said...

Great Job Champ!! I also have hemophilia, I am 19 years old and reading your article, brought tears to my eyes. It was like reading my own heart. I wish you happy and healthy life and to all hemophiliac patients. Stay strong!!

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