As part of an extensive program to support the needs of adults with type 1 diabetes, the Juvenile Diabetes Research Foundation International announced the introduction of a key support program, the JDRF Adult Type 1 Toolkit, to meet an immediate need for resources and community for adults more recently diagnosed with type 1 diabetes – a chronic autoimmune disease often first diagnosed in children.
According to JDRF, the world’s largest charitable funder of research leading to a cure for type 1 diabetes and its complications, half of those diagnosed each year with type 1 diabetes are adults. Overall, adults with diabetes may have lived with the disease for more than 90% of their lives. Moreover, adults newly diagnosed with type 1 diabetes often don’t know where to turn to for support compared with a child recently diagnosed with the same disease, whose parents are often flooded with support and resources to help with coping and care for the child. Many newly diagnosed adults also have different needs from children, and often feel isolated and confused amidst misinformation and misconceptions about the blurring lines between type 1 and type 2 diabetes.
Type 1 diabetes is a chronic, debilitating disease affecting every organ system that strikes children and adults suddenly, and lasts a lifetime. Type 1 diabetes is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. People with type 1 diabetes must take multiple injections of insulin daily or continuous infusion of insulin through a pump just to survive. Taking insulin does not cure any type of diabetes nor prevent the possibility of its eventual and devastating effects: kidney failure, blindness, nerve damage, amputation, heart attack, and stroke. Unlike type 1 diabetes, type 2 diabetes is a metabolic disorder that is often diagnosed in adulthood in which a person’s body still produces insulin but is unable to use it effectively. There are approximately 3 million Americans living with type 1 diabetes, and more than 30,000 children and adults are diagnosed every year.
According to Andrea Hulke, JDRF’s Director of National Outreach, JDRF recognizes that as people grow older, interests, priorities and needs change – especially for adults with type 1 diabetes who must make additional adjustments to manage and cope with the disease. As a result, JDRF has developed an innovative program based on connection points (from the point of diagnosis and beyond) to identify with and support the evolving needs and priorities of the adult with type 1 diabetes. The initiative seeks to engage and provide the adult type 1 diabetes community with support and resources by establishing specific content and tools around Life Stages, the phases of a person’s life living with the disease – point of diagnosis; relationships and marriage; pregnancy and children; in the workplace; and dealing with possible complications.
As part of this initiative, the Adult Type 1 Toolkit will serve as an essential “how-to” guidebook by providing practical medical information and insight for the adult with type 1 diabetes. Written by adults who also have type 1 diabetes, the Toolkit includes advice for the newly diagnosed on how to deal with the diagnosis and management, and also addresses the psychological impact and different feelings that come with having to live with a chronic disease. Often patients experience feelings of shock, denial, fear, grief, loss, hopelessness, or depression upon hearing the news of their diagnosis.
Helpful advice is also given for the adult who has lived with type 1 diabetes for many years, and includes advice on how to tell friends, how to juggle the demands of diabetes at work, and how living with the disease impacts relationships, marriage, and parenting. The Toolkit teaches the patient to help others understand the disease, especially what to do in emergency situations. The Toolkit also provides useful information on handling day-to-day activities with type 1 diabetes, including tips and information on diet and exercise, travel, work, and addresses the impact of type 1 diabetes on women’s and men’s health.
In addition, the Toolkit will offer services connecting the adult with type 1 diabetes with a network of other adults with the disease as well as “expert listeners,” JDRF volunteers who have experienced living life as an adult with type 1 diabetes and can relate to the unique experiences and challenges, thus providing a real, live support system for the patient. The Toolkit will be available at any of the 85 local JDRF chapters nationally or by visiting http://www.jdrf.org/adults.
JDRF is the leader in research leading to a cure for type 1 diabetes and its complications in the world. It sets the global agenda for diabetes research, and is the largest charitable funder and advocate of diabetes science worldwide.
The mission of JDRF is to find a cure for diabetes and its complications through the support of research. Type 1 diabetes is an autoimmune disease that strikes children and adults suddenly, and can be fatal. Until a cure is found, people with type 1 diabetes have to test their blood sugar and give themselves insulin injections multiple times or use a pump – each day, every day of their lives. And even with that intensive care, insulin is not a cure for diabetes, nor does it prevent its eventual and devastating complications, which can include kidney failure, blindness, heart disease, stroke, and amputation.
Since its founding in 1970 by parents of children with type 1 diabetes, JDRF has awarded more than $1.3 billion to diabetes research, including more than $100 million in 22 countries in FY2009.
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Source: JDRF press release