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Joshua Owens, 15-year-old athlete, faces obstacles presented by primary lymphedema

Joshua Owens, 15-year-old athlete, faces obstacles presented by primary lymphedema

Owens family, pictured clockwise from left: Joshua,Tralisia, Burt, and Jonathan

A guest blog post by Burt Owens, dad to Joshua Owens.

My son's name is Joshua Owens. He was born on November 27, 2001, and is now 15. 

Josh had been playing sports since third grade. One evening after football practice when Josh was 12, he asked me and his mom if we thought one of his legs looked bigger than the other. We both answered “yes!” in unison. Josh’s left leg was noticeably larger than his right.

We rushed Josh to the emergency room. After a CT-scan, X-rays, and bloodwork, the doctor could give no reason for the swelling. The next morning, we took Josh to his pediatrician. More bloodwork and many more tests, but still no answers.

We were told to give it a week to see if the swelling would go down on its own. It did, particularly in the morning. But we noticed that, as the day progressed, the leg would swell again.

Josh was frustrated. And so were we. He was a budding young athlete and all he wanted to do was get back to football practice. But I had forbidden it until we had answers.

We went to see Dr. Patrick Thompson, a pediatric oncologist at University of North Carolina Hospital. He was kind and patient. After many tests and an MRI he diagnosed Josh with primary lymphedema. This was the first time we had ever heard that word. And we were devastated to learn there is no cure.

Seeing my son’s face in that moment was painful. Sports are his passion and never playing again seemed out of the question. After many discussions, Dr. Thompson suggested that Josh continue to play, as long as he didn’t report pain or a worsening of the condition.

Josh returned to football, playing out the remainder of the season. Every play made our hearts rush. The fear was almost unbearable! We didn’t have any clue how to deal with this condition or even how to treat it. By watching YouTube, we learned how to do massage therapy and to move fluid.

But we had to do more. So through what we call our godsend, we met with Chandra Stegall, a licensed lymphedema therapist. She changed the total direction and outlook for Josh’s life, as a kid and as an athlete. She introduced us to wrapping and custom compression garments. We now use a Jobst custom compression garment with the flexy knee, which is perfect for Josh and sports. She helped us order a new Tactile Medical Flexitouch pump.

Things started looking up. But we weren’t prepared for the financial impact. Garments cost about $350 each. The pump cost $1000 – after insurance. Insurance barely helps. Because Josh is an athlete, he must have garments replaced more frequently which means more money must be spent. There is no way to replace garments quickly. If one tears, it takes weeks to receive a new one. We pray that changes. Patients need fast and affordable ways to care for this condition.

Josh is now 15 years old and was the only freshman to make Varsity basketball at Forest Hill High School. The team made the North Carolina High School final four this past season. Josh also plays AAU basketball for the Charlotte Nets 15u team, traveling the east coast playing the game he loves, and refusing to let this condition stop him. His dream is to play college basketball and one day the NBA. He is determined to show kids with chronic diseases like lymphedema that they can live their passions and dreams. He fights the urge to be depressed and refuses to let it creep in his mind and spirit. He wants to shine a light on this condition and help find a cure one day. His advice to all who suffer with this condition is "get up and fight back; don’t let it conquer you, you conquer it!”

Through research and perseverance, I know that more kids like Josh will rise up and beat lymphedema.