Rare diseases: Increasing awareness for better patient outcomes
by Brandpoint (ARA) Sponsored Content
Feb 12, 2013 | 19016 views | 0 0 comments | 279 279 recommendations | email to a friend | print
(BPT) - Getting a diagnosis of any cancer can be frightening, but for those diagnosed with a rare cancer, the emotional toll can be much worse. For some of these patients, the journey to a correct diagnosis may take years, and once they receive an accurate diagnosis, it can be extremely difficult for these patients to find accurate information on their disease. One of the first things patients do is research everything they can about their illness, including connecting with someone who is also living with the disease, and learning their options for disease management and treatment.

To help spread awareness for lesser known and potentially life-threatening diseases, hundreds of patient organizations across more than 60 countries will join together on Feb. 28, to observe the 6th annual international Rare Disease Day. On this day, patient groups will host events around the world to celebrate those living with and managing their diseases.

One particular rare disease that may take years to diagnose, is a cancer of the gastrointestinal (GI) tract called gastrointestinal stromal tumors, or GIST. These tumors often do not cause any specific symptoms, making GIST difficult to diagnose. The exact number of people diagnosed with GIST each year is not known. In the U.S. alone, the incidence of GIST is estimated to be up to 6,000 new cases each year.

“Many cases of GIST are discovered in urgent situations when patients are brought to an emergency room. This may results in significant complications since in these cases the disease is often at an advanced stage,” says Dr. Jonathan Trent, Sylvester Comprehensive Cancer Center at the University of Miami. “Through increased awareness, GIST and many other rare diseases may be able to be diagnosed sooner, potentially providing patients with disease management regimens earlier in their illness.”

Thanks to dedicated research and awareness initiatives by patient advocacy organizations and the medical community, there have been significant advances for patients living with GIST in recent years. Increasing awareness for rare diseases is paramount in helping patients get the right diagnosis and information about their illness. Organizations like GIST Support International are helping patients learn more about their disease every day.

“I have actively participated in GIST awareness following my own diagnosis in 1997, when the medical community had limited understanding of this disease, and there was no disease information available for patients, says Marina Symcox, GIST Support International. “At the time, I was able to find out some information from a local patient support group, and later decided to make disease education for other patients my personal mission.”

Because they are passionate information seekers, many patients living with rare diseases and their loved ones act as their own advocates in learning more about their disease and in helping to form their own multidisciplinary care team. With GIST specifically, this care team should include the diagnosing physician, a specialized oncologist and pathologist to work alongside the devoted caregiver or loved one. Each member of this multidisciplinary team has a unique and vital role in helping the patient cope with his or her disease.

To learn more information about GIST and other rare diseases, please speak with a healthcare professional or local advocacy organization, and visit YouTube.com/Novartis.

Copyright 2013 The Times-Independent. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

report abuse...

Express yourself:

We're glad to give readers a forum to express their points of view on issues important to this community. That forum is the “Letters to the Editor.” Letters to the editor may be submitted directly to The Times-Independent through this link and will be published in the print edition of the newspaper. All letters must be the original work of the letter writer – form letters will not be accepted. All letters must include the actual first and last name of the letter writer, the writer’s address, city and state and telephone number. Anonymous letters will not be accepted.

Letters may not exceed 400 words in length, must be regarding issues of general interest to the community, and may not include personal attacks, offensive language, ethnic or racial slurs, or attacks on personal or religious beliefs. Letters should focus on a single issue. Letters that proselytize or focus on theological debates will not be published. During political campaigns, The Times-Independent will not publish letters supporting or opposing any local candidate. Thank you letters are generally not accepted for publication unless the letter has a public purpose. Thank you letters dealing with private matters that compliment or complain about a business or individual will not be published. Nor will letters listing the names of individuals and/or businesses that supported a cause or event. Thank you letters about good Samaritan acts will be considered at the discretion of the newspaper.