Hemophilia: Infusing change – How patients & providers can work together
March is bleeding disorder awareness month. Beyond providing a diagnosis, how can provider work with patients to provide the best care possible?
My experience navigating a rare disease and the troubles that come with it for both patients and provider:
What if I told you the hardest thing about living with a genetic bleeding disorder, like hemophilia, isn’t the joint damage, the surgeries or any of the other physical hurdles? What if I told you, what “hurts” the most is going through a lifetime worth of struggles, disappointments, obstacles, and being told not to do this and not to do that. The hardest thing is the tiresome battle of fighting a disease you cannot beat, but only try to manage.
Don’t get me wrong – the repetitive internal bleeding in my joints caused by hemophilia has left its mark. Today, I live with –
- End-stage arthritis in my right knee resulting in knee replacement
- End-stage arthritis in my left ankle resulting in fusion
- End-stage arthritis in my right ankle (requires fusion)
- Beginning stages of arthritis in toes, an elbow and potentially a shoulder
Physical manifestations of diseases are often easier to diagnose and treat.
The important question, that should be asked, is how is the damage affecting the patient between the ears – how can we understand what it is doing to a patient’s emotional health as they deal with their illness?
Over the years, I’ve given up many things in my life because they’ve become too physically demanding. This is something that weighs heavy on my mind all the time. Combine these losses with overheard comments from people in public, as well as in the hospital setting, and it becomes difficult to handle. Not all disabilities look like the designated handicap symbol.
Take the case of when I fell and hit my head against the wall. I was concerned I had a head bleed – worst-case scenario for a hemophiliac. I went to the emergency room, and because of my disease, I was seen immediately. Then, I overheard staff talking behind the curtain. 'I don’t know why he’s back here, he looks fine and there are people who have been here longer. That’s not fair; he shouldn’t have got through so fast.' The comments bothered me – a head bleed could be life-threatening. Rather than losing my temper outwardly, I used the opportunity to educate the staff about hemophilia and why my concern was urgent.
So, how can medical staff treat the whole patient? It’s simple – ask questions. Get to know your patients and what defines them as a person. If their diagnosis robs them of a key attribute, help them find an alternative. Don’t focus on what a patient can no longer do, focus on how they can find their way back or find something new to conquer.
As a child, my life revolved around sports. At age 12, my parents were instructed to stop me from playing all active sports. The risks were deemed too high, despite being treated prophylactically with factor VIII to prevent further bleeding episodes. Children are not as equipped to handle heavy decisions, especially the ones thrust upon them. I was no different, and my world was crushed. Looking back, I have little or no doubt that I struggled with depression in the time following my removal from sports.
It has been 21 years since, and although I’ve grown to understand why the decision was made, it will forever be a regret of mine – that I didn’t get to play the sports I loved with my best friends. I'll always wonder, 'what if?'
I’ve also learned that diseases don’t define people – rather, it is what one does in spite of their diagnosis. It took me a long time, but I found ways to adapt. Now, I exercise to stay fit, play golf, and recently started playing sled hockey with the Rochester Mustangs. I also share my health journey with medical students and hemophilia patients and their families with the hope my experience can help those in the hemophilia community find better ways to cope and stay healthy.
For medical staff, my goal is to help providers look beyond test results and diagnoses. Learn who your patient is, what drives them, and help them maintain their whole being.
Listen, offer alternatives, and know that asking your patient to give up something they love, even if it’s in their own best interest, may only take a minute for you, but will last a lifetime for them.
I've been fortunate to be a patient at the Mayo Clinic Hemophilia Treatment Center. The coordinated care has been a part of my entire life and has undoubtedly helped me navigate difficult health crises,
Want to meet and talk with other people living with or caring for someone with a bleeding disorder? Start a discussion with Connect members in the Blood Cancers & Disorders group.
This story was also part of the Experts by Experience series in partnership with Inspire