MINNEAPOLIS (WCCO) — A hockey tournament in Maple Grove is bringing attention to an uncommon disease called POTS, which stands for postural orthostatic tachycardia syndrome.

If someone has POTS, it basically means their body can’t keep a regular heartbeat. It often follows some type of viral infection and can be cured.

Luke Decker took his life in April after living with the debilitating condition for months. The hockey rink is where the 14-year-old Decker found his joy.

“Luke’s passion was hockey. He loved hockey,” said Sally Decker, Luke’s mother.

It only made sense that a fundraiser in his name would take place near the ice.

His family and friends are using the Lucas Decker Memorial Tournament as a way to raise awareness of POTS, the condition they believe took Decker’s life.

“It wasn’t the exact cause, but it was directly related,” Sally Decker said. “He just felt awful all the time.”

POTS causes extreme fatigue, headaches and dizziness. It often affects kids and teens.

Dr. Allen Kuperman, Luke Decker’s pediatrician, said most people don’t know about POTS.

“It’s relatively new,” he said. “It’s only been described in children in the last 12 years. The word isn’t out about it.”

Kuperman said diagnosis can be difficult, because it shares the symptoms of other conditions. He also said POTS treatment is difficult to begin and conclude.

For Luke Decker’s friends, hockey will never be the same. However, many now realize that the hockey tournament in his name will help other young people who suffer from POTS.

“Unfortunately, I feel at the expense of my son, I feel a lot of kids are going to get diagnosed sooner,” Sally Decker said.

Money raised by the tournament will go towards POTS research and awareness, as well as hockey scholarships for kids who can’t afford to play hockey.

Comments (6)
  1. Brianna says:

    First and foremost my heart goes out to the family and friends of Luke Decker. I was diagnosed with Postural Orthostatic Tachycardia Syndrome in July of 2008. I do not claim to be an expert, but as I have been dealing with POTS for 3 and 1/2 years, I would like to address the statement “If someone has POTS, it basically means their body can’t keep a regular heartbeat. It often follows some type of viral infection and can be cured.”
    POTS is a form of Dysautonomia which means dysregulation of the autonomic nervous system. It is not that your body can’t keep a regular heartbeat, but that it can no longer properly counter gravity upon standing. This causes abnormal blood flow, tachycardia, pooling of the blood in the legs, and numerous other symptoms of autonomic dysfunction.
    It can be cause by a viral infection as well as brain damage or stress.
    The only “cure” is time. There are coping methods like diet change and exercise. There is no medication for POTS, only medications to help manage the symptoms. These medications can at times bring about more harm that good due to side effects.
    It is estimated that 1 out of every 100 teens has POTS. Dysautonomia Youth Network of America (Dynakids.org) is an organization dedicated to helping and supporting youth with various forms of dysautonomia. They have now expanded beyond the U.S. to help and support youth worldwide. More information on POTS can be found at the Dysautonomia Information Network (dinet.org).

  2. Martha says:

    Brianna’s comment is right on. My son also had POTS, but no one in the family believed there was such a thing. It took 5 yrs for diagnosis – lots of doctors saying it was all in his head, ultimately resulting in his taking his life after 8 yrs and one last doctor appt saying “just deal with it” vs. giving hope. Bottomline, for this disease, more than anything, you need the LOVE and ACCEPTANCE and SUPPORT of the family during this time. For more info, I have posted videos of others with POTs at http://potsinfo.com

    1. Brianna says:

      I’m so sorry for your loss. I had sought help for my problems and ended up misdiagnosed with depression 2 years before I started fainting frequently. If I hadn’t started fainting quite frequently and lost the ability to walk up stairs, I don’t think my family would have believed me about being sick. I had doctors trying to convince me I was crazy and that it was all in my head for the 5 months between when I first started fainting and my diagnosis. They were right when they said it was in my head, just not in the way they thought. And then after my diagnosis, I couldn’t find a capable doctor. I even nicknamed one doctor Dr. Just-deal-with-it because that was all I ever heard from him. The only place I have ever found a doctor who was capable of properly helping me cope and recover was in the Mayo system in Rochester MN and even then it took me 2 years to find doctors who would help. My first neurologist sent me home with a pamphlet on POTS and that was it. Love, Acceptance, and Support are very important when dealing with POTS.

  3. Betsy says:

    In the second paragraph it says “can be cured.” It should be “can’t” as there is no cure. Thanks!

  4. Nicole says:

    If there is a cure they should be sharing that information! I have been suffering with POTS for almost 7 years now and it has taken away most of the late teen/early twenty years. I still struggle day to day and have yet to find many doctors who know what they are talking about and that give any hope other than “it may go away someday” or “just suck it up”
    Martha and the family in this story I am very sorry for your loss 😦

  5. Shelly Juaire says:

    It took A LOT of strong pushing on my part (Mother of a teen girl with POTS). They would not take her seriously. She would complain of the dizziness, headaches and vision going black and even pediatric neurologist would say it was normal teenage stress. Finally we made an appointment at Mayo Clinic. They ruled out anything abnormal by a CAT scan, which our doctors refused to order, and started her on medication. She is much better but not fully. She is hoping that she is one of the 75%-80% of teens that are asymptomatic as adults. I am so sorry for the Decker family.

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