Your Health: 3-28-13 Fabry disease - ABC 33/40 - Birmingham News, Weather, Sports

Your Health: 3-28-13 Fabry disease

Posted: Updated:

     Kidney disease is all too common.   However, there's a rare kidney-related disease that leaves family members questioning whether they will live to see another day.

An Alabaster man was the first patient in the U.S. to received a new drug to treat an enzyme disorder that disable his childhood, attacked his health and his future.

@DOUG MORGAN REMEMBERS A DIS-EASE AND PAIN IN HIS BODY, SINCE CHILDHOOD.

HE TOOK BLOOD PRESSURE MEDICINE WHEN HE WAS IN ELEMENTARY SCHOOL.

Doug Morgan says, "I couldn't play outside with my friends cause I don't perspire I get really hot, overheated turn red and it would cause a lot of pain. The pain was like heightened sensitivity of the skin. A tingling. A burning pain mainly in my feet and hands.

 DOCTORS THEN THOUGHT HE HAD A KIDNEY DISEASE AND RHEUMATIC FEVER.

MORGAN SUFFERED WITH DOULBLE-VISION, DURING COLLEGE...

Morgan says, "You're not able to concentrate , you're dizziness, you can't watch TV, can't really sleep."

...THAT FOLLOWED BY A STROKE.

LATER, DOCTORS DIAGNOSED MORGAN WITH A RARE , UNUSUAL ENZYME DISORDER THAT DESTROYS VITAL ORGANS CALLED FABRY DISEASE.

 UAB Hilda B. Anderson Professor of Nephrology, Dr. David Warnock, M.D. says, "Fabry disease is a rare basic metabolic, inherited disease. It's is transmitted on the female chromosome, on the X chromosome and it involves the heart, brain, the kidneys the skin the GI system."

A LACK OF THE ENZYME CALLED A-GALACTOSIDASE REDUCES THE BREAKDOWN OF A FATTY SUBSTANCE CALLED LIPIDS WHICH BUILD UP TO HARMFUL LEVELS IN THE EYES, KIDNEYS , NERVOUS SYSTEM AND CARDIOVASCULAR SYSTEM.

 Dr. David Warnock says, "The classic history was progressive loss of kidney function to the point that by the age of forty, the patients would require dialysis or transplantation or would die if those were not available."

MORGAN FACED A DIFFICULT TIME.

AT AGE 24, HE WAS DOUBTFUL, HE'D LIVE TO SEE ANOTHER BIRTHDAY.

 Morgan says, "When I had the stroke I was not gonna give up so I may have given up before but not now."

 MORGAN, NOW A CHAPLAIN AT PRINCETON BAPTIST HOSPITAL, HAD FOUND A FRESH FAITH IN A HIGHER POWER.

THE UAB BIOLOGY MAJOR VOLUNTEERED TO TAKE AN EXPERIMENTAL DRUG FOR FABRY DISEASE IN CLINICAL TRIALS IN BETHESDA, MARYLAND.

Morgan says, "I was flying to NIH to get the repligal infusion they were working on the same type drug it's just lower dose."

 THE LOWER-DOSE TEST DRUG DIDN'T STOP MORGAN'S KIDNEY DECLINE AFTER ALMOST TWO YEARS.

 BUT, A STRONGER DRUG WAS IN THE WORKS TO REPLACE THE ENZYME MORGAN WAS MISSING.

 AT AGE 41 MORGAN BECAME THE FIRST U.S. PATIENT TO RECEIVE A FDA-APPROVED INTRAVENOUS INFUSION MEDICATION CALLED FABRAZYME AT UAB IN 2003.

 Dr. Warnock says, "We've been able to stop the loss of kidney function and believe it actually decreases the cardiac involvement and maybe decreasing the ultimate brain involvement in terms of strokes and memory loss."

 BEFORE TAKING THE FABRAZYME INFUSIONS, MORGAN SAYS, HE WASN'T ABLE TO DO MANY FAMILY-FUN ACTIVITIES WITH HIS DAUGHTERS AND WIFE.

BUT, THE DRUG REVIVED HIM, SO TO SPEAK.

Morgan says, " After I was given the Fabrazyme it felt like something had washed through my kidneys to clean them out and I felt much more energetic and able to deal with things."

IT'S BEEN TEN YEARS.   MORGAN CONTINUES TO RECEIVE THE INFUSION TREATMENT.. NOW AT HOME.

Morgan says, "With a needle in the vein, it takes about two hours for me."

MORGAN NEEDS AN INFUSION OF ALMOST TWO VIALS OF FRABRAZYME EVERY TWO WEEKS.

He says, "Sometimes I have a slight reaction because my body sees it as foreign.  It's amazing. It's almost like going to bed with the flu and I wake up and I'm a new person the next day."

AT AGE 51, DOUG MORGAN IS THANKFUL TO BE ALIVE AND ABLE TO FUNCTION AT A HIGH LEVEL.

HOWEVER, HE'S STILL HOPEFUL FOR FURTHER ADVANCES IN ENZYME DISORDER TREATMENT.

 Morgan says, "My hope is they will get away from the infusions I hope they are somewhat uncomfortable..takes a little bit of time.  I'm just hoping that there will be other treatments that may be affective for other people like my children."

 New research is being conducted including aiming to reduce the impact of Fabry disease on the brain and the heart.

Doug Morgan's two daughters are carriers.  One is affected and gets the enzyme infusions every two weeks.  He says, the other daughter shows no signs so far.

Doug's brother also battles ''Fabry'' disease. It's challenged the brother's heart; while kidney function is Doug's greater concern.

Males react differently than females because of the affected X chromosome.

Dr. Warnock says 60 to 70 people in Alabama face an enzyme deficiency.

About half of those patients depend on replacement therapy.

  • Central Alabama NewsMore>>

  • Two-story home destroyed in overnight fire

    Two-story home destroyed in overnight fire

    Tuesday, September 2 2014 7:11 AM EDT2014-09-02 11:11:07 GMT
    Fire destroys two-story home on Letson Farm Trail in McCalla.More >>
    Fire destroys two-story home on Letson Farm Trail in McCalla.
    More >>
  • Labor Day Moon Pie eating contest

    Labor Day Moon Pie eating contest

    Monday, September 1 2014 6:22 PM EDT2014-09-01 22:22:19 GMT
    Dozens of folks got their ''fill'' of a popular Alabama treat this Labor Day.Tannehill State Park hosted the largest Moon Pie eating contest. All total there were 65 people who signed up. The winner receives a cash prize of $100. But this is about more than money. Park administrator, Stacey Green says, "I thought at times it was about the cash prizes, because the adults will win $100. But we've had so many repeat competitors, that I really think they're more in it for bragging rights. I re...More >>
    Dozens of folks got their ''fill'' of a popular Alabama treat this Labor Day.Tannehill State Park hosted the largest Moon Pie eating contest. All total there were 65 people who signed up. The winner receives a cash prize of $100. But this is about more than money. Park administrator, Stacey Green says, "I thought at times it was about the cash prizes, because the adults will win $100. But we've had so many repeat competitors, that I really think they're more in it for bragging rights. I re...More >>
  • Job growth under microscope this Labor Day

    Job growth under microscope this Labor Day

    Monday, September 1 2014 5:50 PM EDT2014-09-01 21:50:56 GMT
    Keeping a roof overhead and putting food on the table. That's still difficult for many Alabamians on this 130th Labor Day. A just released report by Arise Citizens Policy Project warns Alabamians will continue to feel the effects of the great recession for years to come. Arise is a statewide nonprofit, nonpartisan coalition that believes low-income people are suffering because of state policy decisions. Bottom line is that Alabama's unemployment rate stands at seven percent. Yet, the stat...More >>
    Keeping a roof overhead and putting food on the table. That's still difficult for many Alabamians on this 130th Labor Day. A just released report by Arise Citizens Policy Project warns Alabamians will continue to feel the effects of the great recession for years to come. Arise is a statewide nonprofit, nonpartisan coalition that believes low-income people are suffering because of state policy decisions. Bottom line is that Alabama's unemployment rate stands at seven percent. Yet, the stat...More >>
  • Birmingham Area NewsMore>>

  • Birmingham Skyline to be Lit Teal for Cancer Awareness

    Birmingham Skyline to be Lit Teal for Cancer Awareness

    Tuesday, September 2 2014 8:39 AM EDT2014-09-02 12:39:42 GMT
    Raising awareness to the symptoms of gynecologic cancers is a very important mission and could ultimately save women's lives. Three Birmingham organizations — the CanSurvive GYN Cancer Support Group, the Laura Crandall Brown Ovarian Cancer Foundation, and the Norma Livingston Ovarian Cancer Foundation — are partnering to do just that with their “A State of Teal” campaign.More >>
    Raising awareness to the symptoms of gynecologic cancers is a very important mission and could ultimately save women's lives. Three Birmingham organizations — the CanSurvive GYN Cancer Support Group, the Laura Crandall Brown Ovarian Cancer Foundation, and the Norma Livingston Ovarian Cancer Foundation — are partnering to do just that with their “A State of Teal” campaign.
    More >>
  • UPDATE: Birmingham Police investigating homicide in Ensley

    UPDATE: Birmingham Police investigating homicide in Ensley

    Tuesday, September 2 2014 7:44 AM EDT2014-09-02 11:44:25 GMT
    One person dead, one injured in shooting in EnsleyMore >>
    One person dead, one injured in shooting in Ensley
    More >>
  • Last day for parking under I-20-59 bridges downtown

    Last day for parking under I-20-59 bridges downtown

    Monday, September 1 2014 7:48 PM EDT2014-09-01 23:48:58 GMT
    Starting Tuesday, drivers won't be able to park underneath the I-20/59 bridges in downtown Birmingham.Around 400 spaces will be eliminated. It's due to safety concerns stemming from the aging overpass that will undergo repairs.Some call these parking spaces convenient, well shaded, valuable and without them.Robert Langston says, "It's kind of concerning because you need all the parking around here."Charlie Gamble says, "I think it's a mistake, especially when they have a big event." "We picni...More >>
    Starting Tuesday, drivers won't be able to park underneath the I-20/59 bridges in downtown Birmingham.Around 400 spaces will be eliminated. It's due to safety concerns stemming from the aging overpass that will undergo repairs.Some call these parking spaces convenient, well shaded, valuable and without them.Robert Langston says, "It's kind of concerning because you need all the parking around here."Charlie Gamble says, "I think it's a mistake, especially when they have a big event." "We picni...More >>
  • Anniston - Gadsden Area NewsMore>>

  • Arrest made in large level extortion scheme

    Arrest made in large level extortion scheme

    Friday, August 29 2014 12:45 PM EDT2014-08-29 16:45:16 GMT
    "Everett Leon Stout, 72 and Miriam Clair Schultz, 67 are charged with 14 counts of extortion.More >>
    "Everett Leon Stout, 72 and Miriam Clair Schultz, 67 are charged with 14 counts of extortion.More >>
  • Gadsden police recover more than 300 stolen items; felony charges against suspected fence

    Gadsden police recover more than 300 stolen items; felony charges against suspected fence

    Thursday, August 28 2014 11:22 PM EDT2014-08-29 03:22:34 GMT
    Joe Walker Pearl (Photo: Etowah County Sheriff's Office)Joe Walker Pearl (Photo: Etowah County Sheriff's Office)
    Police in Gadsden are trying to return hundreds of stolen items to their rightful owners. Captain Paul Cody said officers bust a large fencing operation this week. Joe Pearl, 75, is the suspect in the case. It took a long time to sort through and document a very wide range of stolen property. "We've collected a lot of stuff," Cody said. "Toilet paper. We have non-firearms related weapons, we have karaoke machines, musical instruments, car stereos, underwear."More >>
    Police in Gadsden are trying to return hundreds of stolen items to their rightful owners. Captain Paul Cody said officers bust a large fencing operation this week. Joe Pearl, 75, is the suspect in the case. It took a long time to sort through and document a very wide range of stolen property. "We've collected a lot of stuff," Cody said. "Toilet paper. We have non-firearms related weapons, we have karaoke machines, musical instruments, car stereos, underwear."More >>
  • Gadsden police arrest suspect in deadly stabbing case

    Gadsden police arrest suspect in deadly stabbing case

    Thursday, August 28 2014 11:37 AM EDT2014-08-28 15:37:31 GMT
    William D'Angelo McKinney (Photo: Etowah County Sheriff's Office)William D'Angelo McKinney (Photo: Etowah County Sheriff's Office)
    Investigators in Gadsden said a man strangled his ex-girlfriend Tuesday evening before stabbing another man to death. Officers arrested 30-year-old William D'Angelo McKinney Wednesday night. He faces charges for murder and domestic violence with strangulation. Police said McKinney went to his ex-girlfriend's home in the Mill Village area and let himself in. Investigators said she asked him to leave, but he shoved her and then put her in a headlock until she blacked out.More >>
    Investigators in Gadsden said a man strangled his ex-girlfriend Tuesday evening before stabbing another man to death. Officers arrested 30-year-old William D'Angelo McKinney Wednesday night. He faces charges for murder and domestic violence with strangulation. Police said McKinney went to his ex-girlfriend's home in the Mill Village area and let himself in. Investigators said she asked him to leave, but he shoved her and then put her in a headlock until she blacked out.More >>
Most Popular
Stories
Videos
loading...
  • Latest StoriesMore>>

  • Birmingham Skyline to be Lit Teal for Cancer Awareness

    Birmingham Skyline to be Lit Teal for Cancer Awareness

    Tuesday, September 2 2014 8:39 AM EDT2014-09-02 12:39:42 GMT
    Raising awareness to the symptoms of gynecologic cancers is a very important mission and could ultimately save women's lives. Three Birmingham organizations — the CanSurvive GYN Cancer Support Group, the Laura Crandall Brown Ovarian Cancer Foundation, and the Norma Livingston Ovarian Cancer Foundation — are partnering to do just that with their “A State of Teal” campaign.More >>
    Raising awareness to the symptoms of gynecologic cancers is a very important mission and could ultimately save women's lives. Three Birmingham organizations — the CanSurvive GYN Cancer Support Group, the Laura Crandall Brown Ovarian Cancer Foundation, and the Norma Livingston Ovarian Cancer Foundation — are partnering to do just that with their “A State of Teal” campaign.
    More >>
  • UPDATE: Birmingham Police investigating homicide in Ensley

    UPDATE: Birmingham Police investigating homicide in Ensley

    Tuesday, September 2 2014 7:44 AM EDT2014-09-02 11:44:25 GMT
    One person dead, one injured in shooting in EnsleyMore >>
    One person dead, one injured in shooting in Ensley
    More >>
  • Two-story home destroyed in overnight fire

    Two-story home destroyed in overnight fire

    Tuesday, September 2 2014 7:11 AM EDT2014-09-02 11:11:07 GMT
    Fire destroys two-story home on Letson Farm Trail in McCalla.More >>
    Fire destroys two-story home on Letson Farm Trail in McCalla.
    More >>
  • Saban: Bama's QB competition continues

    Saban: Bama's QB competition continues

    Monday, September 1 2014 10:26 PM EDT2014-09-02 02:26:09 GMT
    Alabama still has competition for the starting job at quarterback. Crimson Tide coach Nick Saban says both Blake Sims and Jake Coker will play Saturday against Florida Atlantic. He says he hasn't determined how the rotation will work for No. 2 Alabama.More >>
    Alabama still has competition for the starting job at quarterback. Crimson Tide coach Nick Saban says both Blake Sims and Jake Coker will play Saturday against Florida Atlantic. He says he hasn't determined how the rotation will work for No. 2 Alabama.
    More >>
  • Last day for parking under I-20-59 bridges downtown

    Last day for parking under I-20-59 bridges downtown

    Monday, September 1 2014 7:48 PM EDT2014-09-01 23:48:58 GMT
    Starting Tuesday, drivers won't be able to park underneath the I-20/59 bridges in downtown Birmingham.Around 400 spaces will be eliminated. It's due to safety concerns stemming from the aging overpass that will undergo repairs.Some call these parking spaces convenient, well shaded, valuable and without them.Robert Langston says, "It's kind of concerning because you need all the parking around here."Charlie Gamble says, "I think it's a mistake, especially when they have a big event." "We picni...More >>
    Starting Tuesday, drivers won't be able to park underneath the I-20/59 bridges in downtown Birmingham.Around 400 spaces will be eliminated. It's due to safety concerns stemming from the aging overpass that will undergo repairs.Some call these parking spaces convenient, well shaded, valuable and without them.Robert Langston says, "It's kind of concerning because you need all the parking around here."Charlie Gamble says, "I think it's a mistake, especially when they have a big event." "We picni...More >>
  • City of Clay to defend pit bull ban in court Tuesday

    City of Clay to defend pit bull ban in court Tuesday

    Monday, September 1 2014 7:14 PM EDT2014-09-01 23:14:16 GMT
    The city of Clay will defend its Vicious Dog Ordinance Tuesday morning in court. The city council passed the ordinance last year. It bans pit bulls. Mayor Charles Webster calls it the biggest safety issue in Clay since he's been elected.More >>
    The city of Clay will defend its Vicious Dog Ordinance Tuesday morning in court. The city council passed the ordinance last year. It bans pit bulls. Mayor Charles Webster calls it the biggest safety issue in Clay since he's been elected.
    More >>
  • Friday Night Blitz: Coverage lineup for Week 3

    Friday Night Blitz: Coverage lineup for Week 3

    Monday, September 1 2014 6:32 PM EDT2014-09-01 22:32:55 GMT
    Week 3 Blitz Game of the Week:MOUNTAIN BROOK vs HOOVER (The Met)Blitz Cheer:BESSEMER CITY at BROOKWOODBlitz Brigade:HUEYTOWN at MINOROther Notable Matchups:VESTAVIA HILLS at OAK MOUNTAINNORTHRIDGE at MCADORYHILLCREST at CLAY-CHALKVILLE CENTRAL-CLAY at SHELBY COUNTYDEMOPOLIS at CALERAMUNFORD at LEEDSCHILTON COUNTY at PELL CITYPIEDMONT at ASHVILLEMOODY vs SPRINGVILLEJACKSON-OLIN vs BRIARWOODTHOMPSON at SPAIN PARKHEWITT-TRUSSVILLE at TUSCALOOSA COUNTYCORNER vs FAIRFIELDGREENE COUNTY vs GORDOTHOR...More >>
    Week 3 Blitz Game of the Week:MOUNTAIN BROOK vs HOOVER (The Met)Blitz Cheer:BESSEMER CITY at BROOKWOODBlitz Brigade:HUEYTOWN at MINOROther Notable Matchups:VESTAVIA HILLS at OAK MOUNTAINNORTHRIDGE at MCADORYHILLCREST at CLAY-CHALKVILLE CENTRAL-CLAY at SHELBY COUNTYDEMOPOLIS at CALERAMUNFORD at LEEDSCHILTON COUNTY at PELL CITYPIEDMONT at ASHVILLEMOODY vs SPRINGVILLEJACKSON-OLIN vs BRIARWOODTHOMPSON at SPAIN PARKHEWITT-TRUSSVILLE at TUSCALOOSA COUNTYCORNER vs FAIRFIELDGREENE COUNTY vs GORDOTHOR...More >>
  • Member of biker club speaks about fight before shooting

    Member of biker club speaks about fight before shooting

    Monday, September 1 2014 6:29 PM EDT2014-09-01 22:29:44 GMT

    Police: suspect in fight before shooting into crowd

    More >>

    Police: suspect in fight before shooting into crowd

    More >>