THIS ISSUE ISN'T MINOR.
research to save a child's life.
What is Ulcerative Colitis?
Ulcerative Colitis (UC) is defined as an inflammatory bowel disease that causes inflammation and ulcers in one's digestive tract. The disease affects the inner lining of one's large intestine, also known as the colon (Faubion). The disease is incurable, and its origin is a mystery to doctors at both the adult and pediatric levels. The disease affects each person differently, so one must receive regular treatments to manage symptoms. For adults, treatment administration ranges from oral, injectable, and intravenous (IV). In children, these options are much more limited, causing most pediatric patients to be given IV treatments.
The lack of diverse treatment options for minors diagnosed with Ulcerative Colitis in the United States, more specifically, in Atlanta, Georgia, affects those patients and their guardians in many ways, including convenience, affordability, and effectiveness of the treatment in both the short and long term. To improve the quality of life for their patients, pediatric gastroenterologists should dive into more extensive research to begin the process of releasing more treatment options to minors with this disease.
Why do I care?
I was diagnosed with UC in April 2020, so I have been dealing with the disease for four years now. I was 14 at the time of my diagnosis and am 17 currently. I have experienced first-hand the limitations that my age has put on the treatment options available to minors with Ulcerative Colitis. I have also seen how it's affected my quality of life, preventing me from participating in certain activities and causing me to miss out on educational and career opportunities. I have been blessed to be under the care of an experienced doctor at the Children's Healthcare of Atlanta, who has educated me on this disease and how it may impact my life going forward. Since there is no cure for this disease, it is something I must deal with for the rest of my life, so I know that I will need to consider my disease when making any important life decisions. The sources that will be referenced in this campaign are pediatric gastroenterologists, so these sources study and interact with pediatric UC patients to advance knowledge regarding this disease.
Why should you care?
For minors with Ulcerative Colitis in the United States, as well as the specific city of Atlanta, Georgia, it can be difficult to find a convenient and effective treatment option since the patient's age puts a limit on what kind of treatment they can receive.
As an adult patient, one has a much wider array of treatment options that can be suited to the individual patient's lifestyle and financial situation. However, before a patient reaches the age of 18, they are forced to wait for legal adulthood to be offered these treatments. Given that this disease can appear suddenly and at any time, a patient may be kept waiting for years before being able to use a potentially more affordable and convenient treatment option.
Why should you care about this issue?
Several parties are affected by the lack of treatment options for minors with UC, but the primary subjects of this failure are the patients who are unable to be offered different ways to help their condition. The limitations of this disease affect how patients live their daily lives, preventing them from participating in certain activities, such as their education or extracurriculars, which can leave them feeling socially isolated. Those with this condition must also be accustomed to frequent hospital visits, a variety of medications, and the uncertainty of how their disease may impact them. By extension, the parents/guardians of these patients are also affected, given the assumption that they are the financial providers for the minor in their care. Additionally, the doctors who tend to these patients are limited in what they can offer the patient, as well as possibly having to manage a patient's flare-up if their treatment is unsuccessful.
Wondering what you can do to help?
According to a study performed by researchers at Children's Healthcare of Atlanta (CHOA), along with researchers from Emory University, Georgia Institute of Technology, and the Children's Center for Digestive Health Care, "25% of patients with Crohn's disease account for 80% of complications, hospitalizations, surgery, and healthcare costs." (Kugathasan MD). You can help get this number down by donating to the Children's Healthcare of Atlanta to help further their research regarding the origin and treatment of pediatric Ulcerative Colitis!
RISK Study: In this 2017 study referenced earlier, researchers from four pioneer establishments (CHOA, Emory University, Georgia Institute of Technology, Children's Center for Digestive Health Care) aimed to identify indicators of Ulcerative Colitis and Crohn's Disease in pediatric patients, so as to better mitigate the need for risky surgery in these patients.
Thalidomide Treatment: Performed in Beijing, China in 2020, this study holds relevance since the subject of the researchers' efforts is the objective of this campaign: to approve a new form of Ulcerative Colitis treatment for pediatric patients. Although this treatment plan is approved in adults, the researchers test its safety and effectiveness in children and adolescents.
Take Action!
To pediatric gastroenterologists researching this disease in Atlanta, you are responsible for developing new treatment options for minors with this disease! Continue making progress with research on this condition, providing patients with consistently developing options to better suit their needs. Current and future Ulcerative Colitis patients need your help!