A bubbly blog about boys, bleeding, and the basics between.

Saturday, October 29, 2011

Helmet: The Prince of Hemophilia

To wear or not to wear. That is the Question.

I've had a couple of conversations with other hemophiliacs my own age about wearing a helmet while growing up. Some said that they rarely ever did, and then there are people like me who wore one my entire childhood. So what do you think? Helmet? Or no?

According to a Hemaware article from February of 2011 entitled Head Bleeds and Hemophilia, Guy Young, MD, director of the Hemostasis and Thrombosis Center at Childrens Hospital Los Angeles stated,

"If a child is on prophylaxis three times a week and the risk of intracranial hemorrhage is very small, then there’s no need to wear a helmet,” says Young. “It stigmatizes him.” But Young makes exceptions. “For a toddler with an inhibitor engaging in an activity that may lead to trauma, like going to the playground, I would suggest a helmet.” (Entirely borrowed from the above mentioned article. No plagerism here.)

Okay. That's great. But to me, something is rotten in the state of California. I, personally, do NOT agree with wearing a helmet "stigmatizing" a child who has a bleeding disorder. I mean, being alive with a helmet or having major bleeding episodes or damage with not wearing a helmet, I know which one I would choose. I may have felt isolated at times because of my helmet, but guess what, I was different. This idea of treating hemophiliacs like they are normal is just a bunch of bull in my head. We are different, we are not normal. And if there are things such as molded plastic that can cause me to live a longer, healthier lifestyle, than why not?

Now granted, I don't think the bubble boy aspect is the way to go either, and when I was growing up, infusing with factor was a death sentence with the threat of AIDS, so wearing a helmet was also a different thing for me than for parents today. And maybe I didn't need it until I was 13, but when I was sitting in the lunch room at age 11 and got hit in the head with a lunch tray which caused me to be hospitalized for 3 days, I don't blame my mother for making me keep it on.

Now I know I can get a little harsh, but pretty much all the research I have found has stated that wearing a helmet isn't necessary for children, and I think it is. You would never tell a "normal" child not not wear a helmet while riding a bike, so why would you not put a helmet on your child while on a playground, or even if roughhousing with a sibling if head trauma could happen.

I think Laureen A. Kelley said it best in her book Raising a Child with Hemophilia1.
"Ultimately, your decision about gear and when to wear it will be personal: a function of your family beliefs, your concerns, and your child's activity level. Do what's best for your child so he can explore his environment safely and have fun!" (Page 114)
I just wanted to throw out a different idea about helmets. I wore one 24/7 and grew up fine. Parent's and peers all understood the situation and it bothers me that medical professionals don't give children the benefit of the doubt that they will not only accept the child wearing protective gear, but understand and help their peer as well.

Cause look at me! I grew up just fine!

Till we meet again...

1Kelley, Laureen, A. (2007). Raising a Child with Hemophilia. USA: CSL Behring.

Thursday, October 27, 2011

No, Thank YOU Hemophilia

So I have started writing about 6 blog posts and abandoned them all. I just feel like if I am going to say something it should mean something... I mean, I love my ridiculous stories about random things, but I feel like they always have some kind of meaning.

So why this post? Why write about not writing?

Well, for one thing I find irony funny... Come on, HemoHomo? And two, it sometimes takes something major happening in your life to make you realize that the random, pointless, useless things in life really make things seem better.

This has been a harsh week for me. Not only did I completely alienate myself from Tyler's roommates, but my Grandpa Romeo passed. I'm surprised I didn't end up with a bleed with how bad this week is going.

Don't feel too bad; my Pop was 97. He led a long, full life and it was his time. But the idea of death hitting you so close to home can really help you put things in perspective and make you realize what is important and special in your life.

My relationships and family are right at the top of that list. So is my hemophilia.

Wait a minute. My hemophilia is important and special? Absolutely. It's easy to sit here and complain about the burdens that make us different, and that means it's hard to thank those unique imperfections for forming who we are.

I know that I would not be who I am today without embracing my bleeding disorder (or my homosexuality for that matter). Growing up I usually saw it as this overwhelming burden that I would never be able to shake. And so you begin to base your life around it. Music camp instead of sports. Running instead of football. Movies instead of skating. And I don't think I would have ever become a truly fulfilled individual today, being happy with my career, love life, and family all at the same time, if I wasn't ablest truly embrace my disorder while still keeping it at bay.

So Thank You Hemophilia. Thank you for helping to shape me into this person, and hopefully this is a person my Pop will be proud of as he looks down on me.

I know. Weird post, but it'll make you think a little. My advice? Instead of complaining about the things we hate about ourselves, let's all try to embrace them and make that a positive trait. Just because we may not like something about ourselves, doesn't mean that others feel that way. So be you. All of you. All the time.

Till we meet again...

Location:New Jersey 10,,United States

Monday, October 3, 2011

A Lost Boy...

So these past 365 days have been rough on me, but it sparked a flame into starting this blog so I guess some good things have come out of it.

Before November, I can't remember the last time I had to be infused (except for a show injury, but that doesn't count. That's expected. Hahaha). Since then, I have had a head injury, an ankle injury, and a shoulder/neck injury that all had to be infused (or at least a Stimate regimen). And since all this has happened, I cannot help but feel the looming cloud of depression hovering over me as it did in my dark past. It has me wondering... What is the connection between Hemophilia and Depression.

From personal experience, I always get depressed when I am injured. It's hard having to rely on the ones you love for extra help, from big things like getting out of bed or trying to take a shower, to the little things like not being able to open a Tylenol bottle without someone doing it for you. I have always assumed that it is just conditional... While dealing with the cultural aspects of being injured, depression sets in. I get better; it goes away.

But with so many injuries lately I'm beginning to wonder if they feed off of each other. If being injured keeps me depressed, and the depression puts my body in a place to be injured.

Now, I don't want this to sound like a "oh, woe is me" type post. There are MANY people worse off than me and I thank my lucky stars on a daily basis to have been so blessed with the life that I have right now, but with everything that has been happening, I can't help but wonder...

So off starts the hunt for clinical studies. Seretonin and endorphin levels while bleeding internally. How are they effected, if at all? Let's find out...

There was a study done through the University of Arizona involving patients of the Arizona Hemophilia Treatment Center in Tucson comparing patients with Hemophilia to patients without bleeding disorders at the same hospital.

"About 37% of patients treated at the Arizona Hemophilia Treatment Center, in Tucson, were diagnosed with a history of depression, compared with 4% of the general population of adult males, said Alison Stopeck, MD, director of the center." (Susman)

The article continues to discuss that depression in Hemophiliacs with Hepatitis C and/or HIV don't have a higher ratio of depressed patients than those without these diseases. (Susman)

And that was pretty much the only article I could find. The link follows. http://www.medpagetoday.com/Psychiatry/Depression/21167

So my question now becomes, why aren't there more studies in this? Doesn't anyone else find it interesting that there are these connections? For someone who has been battling with depression for years, I know I do.

So "What's Up, Docs?!" Let's get this show on the road! And now that I have passed a brief battle with lethargy, I will be back to blogging and tweeting in full swing!!!

Till we meet again...

Location:8th Ave,New York,United States