Posted July 1, 2013 by Carol Martin in Community

Rare diseases: Increasing awareness for better patient outcomes

Acquiring a diagnosis of any cancer can be frightening, but for these diagnosed with a uncommon cancer, the emotional toll can be significantly worse. For some of these sufferers, the journey to a correct diagnosis could take years, and when they receive an precise diagnosis, it can be extremely challenging for these individuals to find accurate details on their disease. 1 of the very first issues patients do is investigation almost everything they can about their illness, which includes connecting with an individual who is also living with the disease, and learning their choices for illness management and treatment.

To aid spread awareness for lesser recognized and potentially life-threatening illnesses, hundreds of patient organizations across a lot more than 60 nations will join collectively on Feb. 28, to observe the 6th annual international Uncommon Illness Day. On this day, patient groups will host events around the planet to celebrate these living with and managing their illnesses.

1 specific uncommon illness that could take years to diagnose, is a cancer of the gastrointestinal (GI) tract named gastrointestinal stromal tumors, or GIST. These tumors frequently do not trigger any particular symptoms, making GIST tough to diagnose. The exact number of folks diagnosed with GIST each and every year is not identified. In the U.S. alone, the incidence of GIST is estimated to be up to 6,000 new instances each and every year.

&ldquoMany cases of GIST are found in urgent scenarios when patients are brought to an emergency space. This may possibly benefits in considerable complications considering that in these situations the illness is often at an sophisticated stage,&rdquo says Dr. Jonathan Trent, Sylvester Extensive Cancer Center at the University of Miami. &ldquoThrough increased awareness, GIST and several other rare ailments could be in a position to be diagnosed sooner, potentially supplying individuals with disease management regimens earlier in their illness.&rdquo

Thanks to dedicated research and awareness initiatives by patient advocacy organizations and the healthcare neighborhood, there have been significant advances for patients living with GIST in recent years. Escalating awareness for rare ailments is paramount in assisting patients get the appropriate diagnosis and info about their illness. Organizations like GIST Support International are helping patients learn a lot more about their disease every day.

&ldquoI have actively participated in GIST awareness following my personal diagnosis in 1997, when the medical community had restricted understanding of this illness, and there was no disease information available for patients, says Marina Symcox, GIST Assistance International. &ldquoAt the time, I was able to discover out some details from a nearby patient assistance group, and later decided to make illness education for other patients my individual mission.&rdquo

Since they are passionate info seekers, several individuals living with uncommon diseases and their loved ones act as their personal advocates in understanding far more about their illness and in assisting to kind their own multidisciplinary care team. With GIST particularly, this care group should contain the diagnosing doctor, a specialized oncologist and pathologist to function alongside the devoted caregiver or loved 1. Each member of this multidisciplinary group has a distinctive and crucial role in assisting the patient cope with his or her illness.

To understand more information about GIST and other uncommon ailments, please speak with a healthcare specialist or regional advocacy organization, and check out YouTube.com/Novartis.

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Carol Martin