Your Health: Sarcoidosis in children - ABC 33/40 - Birmingham News, Weather, Sports

Your Health: Sarcoidosis in children

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Birmingham, AL -


 "I  started getting a cough and it started going on and on.  And I started getting night sweats and I started getting all these flu symptoms as time went on," said 15 year old, Herman DeCarri Wells.
    
   This was in late 2011.

     Medications and care for his asthma and allergies soon went beyond antihistamines and an albuterol inhaler
     At age 13, Herman DeCarri Wells repeatedly became sick.
     The number of Visits to various doctors outweighed the answers to what was wrong.

 Wells says, "One time I had started coughing and my chest was hurting so bad .. I really couldn't stop coughing. I couldn't really breath that well. I could barely get out of bed."
 
     His mother, Claudia Young says, "His breathing was so shallow. He couldn't walk from one room to the next without getting out of breath."

     The hospital staff in Atlanta became very familiar with Herman DeCarri.
      Concern grew as he developed pneumonia in both lungs.
 
     Young says, "That Feb he was hospitalized pneumonia.  My child has never had pneumonia. It's been just constantly."

      Finally, After a sinus surgery and a lung biopsy, Decarri's pulmonologist diagnosed him with the auto immune disease, known as ... Sarcoidosis.
 
     Young says, "He told me I don't know a lot about it, but, together we're going to find out what we need to do."

         Sarcoidosis most commonly attacks the lungs and lymph nodes however it can affect multiple organs including the brain.  
         It's typically seen among adults.
         DeCarri's diagnosis was shocking because of his age.

     Dr. Joseph Barney with UAB's Multidisciplinary Sarcoidosis Clinic says, "It's fairly uncommon although there are forms of it that can occur in children, as young as infancy to teen years.  It's much more common in adults in their 20s to 30s as the time of when it's diagnosed.  In children it often shows up as joint issues or eye problems."

   An aggressive series of treatments of steroids and methotrexate  not without side affects has freed DeCarri of any recent sarc episodes.

       Young says, "He took his last methotrexate the week of Christmas.  Thank the Lord, he's been doing good.  A couple of weeks ago he had a cold.   It scare us."

     And the family is speaking out about it.
    The homeschooler and music enthusiast is now using his creativity to help educate others about Sarcoidosis.  He created the artwork on their brochure: Stomp Sarc.

 Young says, "I go out and hand out pamphlets and people say, I've never hear of it."

    Claudia Young started a support group one year ago, hoping to meet other
children, like DeCarri.   So far about 30 adults make up the group.

    Young says, "I think it helps him to know he's not alone.  A lot of them would say, we have kids with certain symptoms; but, doctors would say, no, your child couldn't. Now, they actually know a child with Sarcoidosis."

     UAB's Dr. Joseph Barney agrees the benefits of Sarc patients gathering and sharing of their experiences help in more ways than one.

      Dr. Barney says, "Many patients feel so isolated and alone when they are first diagnosed and when they struggle to explain that to their family members even what it's like when they have symptoms that seem very debilitating for a disease that can be very serious."
 
      Herman DeCarri Wells says, it's great his mother started the support group for him and people like him with a disease they don't know much about.

 
         There's an upcoming walk to raise money for the UAB Sarcoidosis Research Fund.  The Sarcoidosis Hope Walk is April 12th  at the Vivian Lee Maddox Sports Complex in Rainbow City.  Registration at 8:00 a.m.   The walk begins at 9:00a.m.
    The support group's next meeting is June 21st at 2:00 p.m. at UAB Hospital's West Pavilion.

  

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