Unpopular Crohn’s Disease Challenging To African-American Youth And Young Adults
http://www.aframnews.com/html/interspire/articles/1142/1/Unpopular-Crohns-Disease-Challenging-To-African-American-Youth-And-Young-Adults/Page1.html
Marvin D. Cloud
Marvin D. Cloud is Web Developer and a writer for the African-American News&Issues.By Marvin D. Cloud
Published on 11/18/2009
HOUSTON- Ask any African-American and they can probably rattle off the top 10 leading illnesses that affect Blacks as well as another ethnic groups: 1. Heart Disease 2. Cancer 3. Stroke 4. Diabetes 5. Obesity 6. Infant mortality (SIDS) 7. High Blood Pressure (hypertension) 8. HIV/AIDS 9. Chronic respiratory disease and 10. Kidney disease. However, there is another disease that has been around a long time, and is leaving its mark on African-Americans— although even the ones who have heard of it, don’t know much about it.
Chances are Crohn’s won’t make the top ten list for African-Americans anytime soon. In fact, African-Americans are at a “decreasing risk,” as opposed to Jewish people who “have an increased risk of developing” the debilitating, chronic gastrointestinal (GI) illness in which the body’s immune system attacks healthy cells in the GI tract. Yet words like “decreasing risk,” do little to salve the minds and spirits of those Blacks who are among the 500,000 Americans who are struck with it.
The low percentage of African-Americans known to have the disease may be due to the disease being often misdiagnosed, regardless of race. Sometimes well-meaning doctors confuse the symptoms which include severe stomach cramping, bloating and fatigue, and the accompanying isolation due to sudden flare-ups, the need to be near a bathroom and other very personal symptoms, with other illnesses such as Irritable Bowel Syndrome or ulcerative colitis.
Although Crohn’s disease can occur in people of all age groups, it is mostly diagnosed in people between the ages of 20 and 30. Just ask Kierra Lee, an 18-year-old student at Texas A&M.
Lee was in the 7th grade when she started experiencing extreme weight loss. At age 12, her weight went up and down, provoking suspicions of bulimia and anorexia. “I got down all the way to 50 lbs. I lost 20 lbs. in one month,” said Lee, a native of Houston.
She missed many days from school, but because of arthritis, she could no longer play soccer for her middle school team. She continued, “I had to put restrictions on everything I was doing. I didn’t want to take medicine every morning and so I fought it for the first couple of weeks. I constantly asked, ‘Why me?’”
She credits her grandmother, Gloria, who raised her from the age of nine months, with helping her to view Crohn’s as a challenge, but one that could be overcome. “She has been very supportive. She cooks for me and eat with me,” stated Lee who is the first person in her family who has contracted the disease.
The first year sociology student said she wants others to understand that it is a disease like all other diseases. “You can have a normal life. It’s not going to stop me,” she declared.
She also pointed out that there were support groups available. “People want us to do good,” she stated. Her message to other young people who are struggling with the disease is, “You can do it. It might be hard, but it is not impossible. I am a living testimony.”
Logan Thornton concurs with Lee’s assessment. Thornton 33, was diagnosed with Crohn’s disease at age 22. Her ordeal started innocently enough.
‘I was dating a guy from the Caribbean and I started eating spicy foods. I realized that every time I did, I had to run to the bathroom. However, I soon discovered that non-spicy foods did the same thing.”
After six months, she visited a gastrologist who, diagnosed her dilemma as Irritable Bowel Syndrome. The prescribed treatment was a bland diet. Several months later, she said, “something still wasn’t right.” Thornton transferred to another gastrologist who made the correct diagnosis.
At the time she was on track to become a physician and had worked in an obgyn office and volunteered in a clinic. Then she was afflicted by this unknown disease.
“No one else I knew had it. I felt betrayed. I was eating right and I exercised. I was caught off guard and I became skeptical and less trusting.”
Thornton said she went on an “info seeking mission,” in order to find out all she could about it. Personally, she states that at first she was devastated because of the forced changing of her daily activities.
“I was chained to a bathroom and had to stay in a familiar environment. It was very frustrating to get questions that I had no answers to. In the early stages, Chron’s is tricky and unpredictable.”
She said that she sought out religious advisors, but “they had no more control over my life than they did.” But family members wanted to learn more and due in part to their awesome support, Thornton decided to not let the disease rule her.
“What drives me is how much I am an advocate for myself,” she continued. Now a student at the University of Texas - School of Public Health, said she wants everyone to know that the “unpopular’ disease “can be truly devastating for adolescents. Some young people have to endure numerous surgeries,” she pointed out. We must become more aware of this and all health issues which plague our community.”
Thornton said she is really interested in health disparities in the African-American community. “I want to do research for the African-American community.” Her enthusiasm is personal in more than one way. “I have a father who suffers from diabetes complications,” she said.
“I want African-Americans to make some really sound medical choices. I’ve found that in some hospitals, decisions are made for African-Americans, especially when no one comes to see them. African-Americans should be empowered to know about their own condition ... that’s powerful. The lesson is self-advocacy and empowerment. We must be open to all forms of s to healthcare.”
When Union Chimique Belge (UCB) announced 31 recipients of the fourth annual UCB Crohn’s Scholarship, awarded to outstanding students of all ages who are living beyond the boundaries of Crohn’s disease, both Lee and Thornton were recipients. The company has granted more than $1 million ($10,000 each to a total of 105 winners) to individuals pursuing their educational dreams. The 2009 winners were honored at an awards dinner last month in San Diego, Calif.
Dr. Marla Dubinsky, Co-Chair of the Crohn’s Scholarship Selection Committee and Director of the Pediatric Inflammatory Bowel Disease Center at Cedars-Sinai Medical Center said, “These scholarship winners are an inspiration to others living with the disease; they prove that it’s possible to be successful academically, professionally and personally while living with Crohn’s.”
Upon learning that she had won a scholarship, Lee said, “I was shocked. They called me around 10p.m. What are the odds? I tried to remain calm. I love my grandmother and I know she didn’t have the money to send me to school.”
Likewise, Thornton said, “I was totally excited and overwhelmed. My field of study is time-extensive, research extensive and cost extensive. Without the scholarship, I would be in a different situation. I am totally grateful. I can go to school without concerns about how I am going to pay for it.”
Applications for the 2010 Crohn’s Scholarship Program will be accepted through Friday, February 12, 2010. For information on applying, or to learn more about Crohn’s disease and the scholarship winners, visit www.CrohnsAndMe.com or visit the Crohn’s & Me Facebook page.
HOUSTON- Ask any African-American and they can probably rattle off the top 10 leading illnesses that affect Blacks as well as another ethnic groups: 1. Heart Disease 2. Cancer 3. Stroke 4. Diabetes 5. Obesity 6. Infant mortality (SIDS) 7. High Blood Pressure (hypertension) 8. HIV/AIDS 9. Chronic respiratory disease and 10. Kidney disease. However, there is another disease that has been around a long time, and is leaving its mark on African-Americans— although even the ones who have heard of it, don’t know much about it.
HOUSTON- Ask any African-American and they can probably rattle off the top 10 leading illnesses that affect Blacks as well as another ethnic groups: 1. Heart Disease 2. Cancer 3. Stroke 4. Diabetes 5. Obesity 6. Infant mortality (SIDS) 7. High Blood Pressure (hypertension) 8. HIV/AIDS 9. Chronic respiratory disease and 10. Kidney disease. However, there is another disease that has been around a long time, and is leaving its mark on African-Americans— although even the ones who have heard of it, don’t know much about it.
Chances are Crohn’s won’t make the top ten list for African-Americans anytime soon. In fact, African-Americans are at a “decreasing risk,” as opposed to Jewish people who “have an increased risk of developing” the debilitating, chronic gastrointestinal (GI) illness in which the body’s immune system attacks healthy cells in the GI tract. Yet words like “decreasing risk,” do little to salve the minds and spirits of those Blacks who are among the 500,000 Americans who are struck with it.
The low percentage of African-Americans known to have the disease may be due to the disease being often misdiagnosed, regardless of race. Sometimes well-meaning doctors confuse the symptoms which include severe stomach cramping, bloating and fatigue, and the accompanying isolation due to sudden flare-ups, the need to be near a bathroom and other very personal symptoms, with other illnesses such as Irritable Bowel Syndrome or ulcerative colitis.
Although Crohn’s disease can occur in people of all age groups, it is mostly diagnosed in people between the ages of 20 and 30. Just ask Kierra Lee, an 18-year-old student at Texas A&M.
Lee was in the 7th grade when she started experiencing extreme weight loss. At age 12, her weight went up and down, provoking suspicions of bulimia and anorexia. “I got down all the way to 50 lbs. I lost 20 lbs. in one month,” said Lee, a native of Houston.
She missed many days from school, but because of arthritis, she could no longer play soccer for her middle school team. She continued, “I had to put restrictions on everything I was doing. I didn’t want to take medicine every morning and so I fought it for the first couple of weeks. I constantly asked, ‘Why me?’”
She credits her grandmother, Gloria, who raised her from the age of nine months, with helping her to view Crohn’s as a challenge, but one that could be overcome. “She has been very supportive. She cooks for me and eat with me,” stated Lee who is the first person in her family who has contracted the disease.
The first year sociology student said she wants others to understand that it is a disease like all other diseases. “You can have a normal life. It’s not going to stop me,” she declared.
She also pointed out that there were support groups available. “People want us to do good,” she stated. Her message to other young people who are struggling with the disease is, “You can do it. It might be hard, but it is not impossible. I am a living testimony.”
Logan Thornton concurs with Lee’s assessment. Thornton 33, was diagnosed with Crohn’s disease at age 22. Her ordeal started innocently enough.
‘I was dating a guy from the Caribbean and I started eating spicy foods. I realized that every time I did, I had to run to the bathroom. However, I soon discovered that non-spicy foods did the same thing.”
After six months, she visited a gastrologist who, diagnosed her dilemma as Irritable Bowel Syndrome. The prescribed treatment was a bland diet. Several months later, she said, “something still wasn’t right.” Thornton transferred to another gastrologist who made the correct diagnosis.
At the time she was on track to become a physician and had worked in an obgyn office and volunteered in a clinic. Then she was afflicted by this unknown disease.
“No one else I knew had it. I felt betrayed. I was eating right and I exercised. I was caught off guard and I became skeptical and less trusting.”
Thornton said she went on an “info seeking mission,” in order to find out all she could about it. Personally, she states that at first she was devastated because of the forced changing of her daily activities.
“I was chained to a bathroom and had to stay in a familiar environment. It was very frustrating to get questions that I had no answers to. In the early stages, Chron’s is tricky and unpredictable.”
She said that she sought out religious advisors, but “they had no more control over my life than they did.” But family members wanted to learn more and due in part to their awesome support, Thornton decided to not let the disease rule her.
“What drives me is how much I am an advocate for myself,” she continued. Now a student at the University of Texas - School of Public Health, said she wants everyone to know that the “unpopular’ disease “can be truly devastating for adolescents. Some young people have to endure numerous surgeries,” she pointed out. We must become more aware of this and all health issues which plague our community.”
Thornton said she is really interested in health disparities in the African-American community. “I want to do research for the African-American community.” Her enthusiasm is personal in more than one way. “I have a father who suffers from diabetes complications,” she said.
“I want African-Americans to make some really sound medical choices. I’ve found that in some hospitals, decisions are made for African-Americans, especially when no one comes to see them. African-Americans should be empowered to know about their own condition ... that’s powerful. The lesson is self-advocacy and empowerment. We must be open to all forms of s to healthcare.”
When Union Chimique Belge (UCB) announced 31 recipients of the fourth annual UCB Crohn’s Scholarship, awarded to outstanding students of all ages who are living beyond the boundaries of Crohn’s disease, both Lee and Thornton were recipients. The company has granted more than $1 million ($10,000 each to a total of 105 winners) to individuals pursuing their educational dreams. The 2009 winners were honored at an awards dinner last month in San Diego, Calif.
Dr. Marla Dubinsky, Co-Chair of the Crohn’s Scholarship Selection Committee and Director of the Pediatric Inflammatory Bowel Disease Center at Cedars-Sinai Medical Center said, “These scholarship winners are an inspiration to others living with the disease; they prove that it’s possible to be successful academically, professionally and personally while living with Crohn’s.”
Upon learning that she had won a scholarship, Lee said, “I was shocked. They called me around 10p.m. What are the odds? I tried to remain calm. I love my grandmother and I know she didn’t have the money to send me to school.”
Likewise, Thornton said, “I was totally excited and overwhelmed. My field of study is time-extensive, research extensive and cost extensive. Without the scholarship, I would be in a different situation. I am totally grateful. I can go to school without concerns about how I am going to pay for it.”
Applications for the 2010 Crohn’s Scholarship Program will be accepted through Friday, February 12, 2010. For information on applying, or to learn more about Crohn’s disease and the scholarship winners, visit www.CrohnsAndMe.com or visit the Crohn’s & Me Facebook page.