HemaBlog™

Breaking the stigma


It was a pleasure to see a friend of mine, Tom Albright, in Denver a few weeks ago at the National Hemophilia Foundation meeting. Always cheerful, always proactive, he’s the kind of guy whose goodwill stays with you long after he’s gone. You’d never know he had suffered so much, but read his story, and listen to his message. As usual, he’s inspiring!

Some of you may have lead a life similar to mine. My limbs and joints were damaged by hemophilic arthopathy at a very young age. The many bleeds I had as a baby, toddler, and adolescent destroyed, deformed, and limited my joints. This led to many other secondary problems: major orthopedic surgery at ages 5 and 7 (once on each ankle to lengthen the Achilles tendons); countless pairs of braces, crutches; traction; being bed-ridden and wheelchair bound. All this led to severe muscle atrophy, limited joint movement, altered walking gait, and altered standing positions.

Now, my left foot is really messed up from the Achilles tendon lengthening surgery when I was 5. That foot is a size 8 1/2 while my right is a size 10; my feet have been that way since I was 5. I lost all my left ankle joint motion from that surgery and the weeks I spent in a cast afterwards.

I was embarrassed to show my legs by wearing swimsuits or shorts in public for a long time in my life and still have to deal with the stares from others even though I’ve gotten over being embarrassed. I realized a long time ago that people come in all shapes and sizes; and this is the way God made me! Still I can’t help but notice some hemophilic Bro’s feel like me and hide inside shoes and pants most of the time.

It used to be most embarrassing for me when it came to courting girls in high school; adulthood brought me girls who didn’t “see” the deformities. My wife of 20 years is the last one of those girls. Once I was married I knew I was always going to be faithful to my wife, so I said “to hell with embarrassment” and started wearing shorts and sandals all the time. It was great! I wear shorts and sandals all the time now even when the cool dudes are wearing pants in the summer heat. Nobody ever makes me feel uncomfortable about my skinny, deformed legs and arms. I bring it up more than anyone else, just to joke around.

To me this as an issue is not discussed enough, if at all; maybe because people find it embarrassing.

Let’s break this “stigma.” The only way to do that is to bring our deformed limbs out of the closet. I think others need to see them. I know I do. I feel alone when I don’t actually see the same hemophilia limb deformities in others. We all see Bro’s with the “Hemophilia Strut” walking around at hemophilia meetings, so it’s no secret that these deformities exist. Proudly showing our limbs, or showing photos of hemophilic limb deformities, could be useful to help any of our brothers who struggle with self-image. We could be positive role models and mentors for them!

Tom Albright is a 45-year-old with factor IX deficiency who lives with his wife Sue in Arkansas.

Good Book I Just Read
Learning to Breathe by Alison Wright
A photojournalist who travels to all ends of the earth for her exciting profession survives a devastating bus accident in Laos in 2000. This book chronicles her accident, her injuries (unbelivable, even to the medical profession), how she stayed alive for 14 hours with no medical care, and her eventually recovery. She not only recovered, but set the bar higher in the subsequent years while still in chronic pain, by scuba diving, white water rafting in Africa and the ultimate, climbing Mt. Kilimanjaro. It’s almost too preposterous to believe, but Wright is no ordinary person. Her travels throughout Asia had put her in touch with Buddhism and serious training in meditating, and she leaned on her techniques to survive. Wright uses “breathing” as a metaphor for her life after the accident. In meditating, breathing is a technique of focusing on the moment, in an effort to slow life down and slow our thinking, to enjoy the present, and thus life. Wright survived with many scars and many years of surgeries, but came out wiser, more sensitive and with even greater adventure. You’ll be amazed by all the activities she does. The story is gripping and motivating, but the writing style I will admit is a bit flat, especially considering the incredibly rich places she has been and things she has seen. Wright is obviously more comfortable telling stories through her photos; this one could have benefited from more sophisticated editing and writing to do the story and places justice. For most people, the story itself will be enough. Three stars.

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