The transition to adulthood is an exciting time for any young adult, and can include living on their own for the first time, beginning a job, or starting a college/higher education experience. However, this also means young adults must learn quickly how to juggle the inevitable increase of personal responsibility.
Dakota, age 20, is a PharmD student at the University of Missouri – Kansas City’s School of Pharmacy. Dakota shares in the below FAQ:
- how he balances all these new responsibilities as a young adult living with severe hemophilia
- why he chooses to stay involved in the bleeding disorder community
- how having a bleeding disorder has helped direct his career path in college
- offers important advice for other young adults living with a chronic condition
1. What kind of a bleeding disorder do you have? When were you diagnosed?
I have severe hemophilia A. I was diagnosed at birth or the days following like many of my bleeder brothers and sisters were. Suspicion that something wasn’t right began when I was 4 months old due to the heavy amount of bruising which started showing up all over my legs. After many visits to the pediatrician and an interesting encounter between my parents and DFS (Department of Family Services; they actually thought my parents were beating me profusely) my final diagnosis came at 13 months old!
2. What was it like to live with a bleeding disorder growing up?
Growing up with a bleeding disorder wasn’t terrible at all. From a young age, I knew there were certain activities, such as wrestling or football; I would never be able to participate in. I learned to compensate by doing other things, which essentially meant that I spent a ton of time outside (I was never good at video games so we will leave that area uncharted) either lifting weights, running, or swimming with friends and my family.
3. How has a bleeding disorder influenced your career?
My bleeding disorder practically steered me in the direction I am currently going in with my career. This fall I will start classes at the University of Missouri – Kansas City School of Pharmacy and am eagerly pursuing a Doctor of Pharmacy (PharmD)! I considered myself amongst the lucky ones who knew what they wanted to pursue as a career in my high school years. A majority is thanks to my involvement with the bleeding disorder community from when I was diagnosed.
4. Studies have shown that “healthier bodies bleed less.” What do you do to stay healthy?
I like to think I live a relatively healthy lifestyle. I work with weights as well as doing some form of cardio 5 days a week, and I am pretty well disciplined eating healthy most of the time (unless it’s around the holidays, but again, we wont get into things I’m bad at). Many of these activities tend to put a lot of heavy strain on my joints, to compensate I infuse on a “prophy” schedule three times a week to prevent any unwanted (but really, when are they wanted?) bleeds.
5. Recently you created an app, called HemoTool. What was the idea and purpose behind it?
Initially, HemoTool started as a project I intended to use for myself and only myself. However the more functionality I put into it, the more I decided it could be used to help many other people who live with bleeding disorders (including their caregivers). Yes, I knew there were already apps out there, but none of them seemed to work for me. In an industry where choice is being progressively lessened to patients dealing with a bleeding disorder, offering up HemoTool to people as a free download and more choice would mean I was doing my part to give back to the community and help people (and their caregivers) better manage their condition. For those that aren’t aware, HemoTool is a simple, “click and go” solution to logging bleeds and keeping track of their infusions. Not only does it allow users to log any treatment, but it also enables them to order new medication from their pharmacy, submit logs to insurance companies/physicians, and locate an HTC when on the go anywhere within the US! It’s been a project of mine for quite some time, and I’m thankful to watch it start to really take off.
6. Why do you choose to stay involved in the bleeding disorders community?
Staying involved in the bleeding disorder community isn’t always easy with regards to strenuous schoolwork and obligations in my personal life. However I always find time to give back to a community, which has given me so much over the years. I wouldn’t be the person I am today, if it hadn’t been for the way some of the great role models in this community have molded and shaped me.
7. If you could give advice to a new parent of a recently diagnosed child, what would it be?
The first thing I want them to know is this: You are in great hands and I promise we don’t bite. Everyone involved in the bleeding disorder community, be it the caregivers, the physicians, or even other people living with the condition, is there for you at any time. Get involved in a local chapter and reach out to other families for support; it’s comforting and shows how little you are actually alone. Yes, I will admit, it is a bit overwhelming at first, but with all of the resources available it will be easy to recognize this community is much more of a family than meets the eye. Now, the family might have some crazy aunts or an unruly cousin twice removed, but what family doesn’t?
8. If you could give advice to a teenager with a bleeding disorder not involved in the community, what would it be?
GET INVOLVED! With all of the opportunities around, getting involved whether it be through volunteering at a local camp, volunteering at a fundraiser, or writing for one of the many newsletters, there are tons of ways to can get involved and be heard. Any form of leadership you can acquire makes you stand out as a leader and mentor to the younger kids in the community, which is a feeling that can’t be mimicked. The worst thing anyone can do is live with regrets, and not being involved as the ever-growing success of our community becomes more and more evident is something anyone will truly regret.
9. What does our community’s history mean to you?
The bleeding disorder community is as a great example of getting back up after being kicked down. The HIV/AIDS epidemic in the 1980s affected everyone with a bleeding disorder and their loved ones in so many ways. As the years went on, those who survived discovered the true meaning of life and moved on to advocate for the future generations of “Bleeders.” They now show the world “We are still here, and we wont be giving up that easy.” Stories like that make me appreciate this community in a whole new light, and its one I’m proud to say I’m a part of.
10. If a magic wand could take away your bleeding disorder, would you do it. Why or why not?
Absolutely not. Having hemophilia has shaped me, it has given me direction in life and most importantly it has given me a great group of life-long friends. Taking away my hemophilia would be like taking away a part of me. Not just any part either, but one of the most important ones which makes me who I am.