Tuesday, February 25, 2014

Felicia Padilla 5th period: "Texas brothers diagnosed with rare, deadly disease"


Two very different brothers from Humble, Texas share a rare, life-threatening disorder known as Alport Syndrome. Their disease was discovered this past summer.Let's rewind to when Jonathan entered third grade and Christopher entered first grade. Both experienced  unexplained hearing loss in both ears. The doctors were puzzled but simply fitted the boys with hearing aids and sent them on their way.Through their childhood both boys consistently tested positive for protein and blood in their urine. They underwent a large number of examinations, but each time nothing turned up.Finally last summer, Jonathan's mom began to worry about his appearance. He was exceptionally pale and at six-feet two-inches tall, he weighed only 129 pounds. When she brought her concerns to his pediatrician, he suspected cancer and immediately sent him to nearby Texas Children's Hospital.Naquin, the boys' mother, said the hospital refused to admit Jonathan at the time. Instead they sent the family home with a printout explaining Alport Syndrome. Until then, the disease had never been mentioned, she said.They discovered Alport is a rare genetic disorder that attacks the connective tissue of the kidneys. The first symptoms are blood and high protein levels in the urine. Since the ears and eyes share a similar type of connective tissue with the kidneys, the condition can cause hearing loss and changes to eye structure. Left untreated, Alport leads to kidney failure and death.Ultimately tests confirmed that both boys had Alport Syndrome. Doctors determined that Jonathan's kidneys were rapidly failing, and he needed a kidney transplant quickly. Last week, he was placed on the organ transplant list at St. Jude's Hospital in Houston. Many family members and friends have been tested to see if they are a match.As for Christopher, he was immediately given medication to prevent further damage to his kidneys. However, he too will need dialysis or a kidney transplant before the age of 30. Actually, both boys are likely to need multiple kidney transplants throughout the rest of their lives.Because Alport is such a rare disease and the initial symptoms are common to many other conditions, it's often missed. Fewer than 60,000 Americans have Alport Syndrome. Due to this, it receives very little funding and awareness.Alport Syndrome has no cure. However, the disease is treatable. 

http://gma.yahoo.com/texas-brothers-diagnosed-rare-deadly-disease-095645514--abc-news-topstories.html 

3 comments:

  1. I've never heard of this disease until now. It's incredible how long it actually takes to diagnose some things until later on in life. Glad to know the brothers are okay though.

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  2. I hope they make it. Its really sad when things like this happen to people, especially to children.

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  3. It's sad that they were unfortunate enough to have such a rare disease, but at least it's treatable. Maybe if they can increase awareness of the disease, then there could be more advances in treatments made.

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