FAQs by JDRF

FAQs by JDRF
http://jdrf.org/life-with-t1d/frequently-asked-questions/#types


What is the “honeymoon phase”?

In a person who has type 1 diabetes (T1D), the insulin-producing beta cells in the pancreas are destroyed by immune cells. However, right after the time of diagnosis, some people go through a “honeymoon phase” in which their existing beta cells still function. Halting the autoimmune response in people with new onset T1D and those who are at risk is one of the chiefareas of research JDRF is focused on. JDRF funds a number of efforts to curb the progression of T1D in newly diagnosed individuals. A number of research projects funded by JDRF have shown promise in preserving the function of these existing beta cells in people with T1D past the honeymoon phase.


Is type 1 diabetes hereditary?

Researchers are still trying to get a clear picture about how genes and environmental factors interact to determine a person’s risk of developing type 1 diabetes (T1D). Forty percent of everyone in the United States carries one or more of the HLA genes (human leukocyte antigen) which lead to increased risk of T1D. To be at increased risk, however, an individual needs two copies of these genes, one from each parent. One in 400-500 people in the general population develops T1D, but 1 in 20 (5 percent) people are at risk if a parent, sibling, or child has the disease. Research has shown, however, that genes don’t tell the whole story, and suggests that environmental factors (which are not yet fully known) play a role as well. JDRF is currently funding a study that follows more than 7,000 newborns at increased genetic risk of developing T1D and will collect vast amounts of data on potential environmental factors over a 15-year period to see which ones are associated with a greater or lesser risk of developing the disease.


How did my child get type 1 diabetes? We have no family history.

Research has shown that at most, only 15 percent of people with type 1 diabetes (T1D) have an affected first-degree relative – a sibling, parent, or offspring. Based on research, we also know that genes account for less than half the risk of developing T1D. These findings suggest that there are other factors besides genes that influence the development of diabetes. We don’t know what these factors are, but a number of different theories exist.

In general, there is a misconception that T1D is a familial disease and primarily occurs in families where there is someone else with T1D. In reality, only about 10% of individuals who are diagnosed withT1D have a family history of the disease.

For detailed information, you can read about the current research into the genetics of T1D on this website.


How long will I or my loved one have type 1 diabetes? Can you outgrow it? What is the life expectancy?

At this point, type 1 diabetes (T1D) is a chronic disease, meaning you never outgrow it. However JDRF is doing everything in its power to improve the lives of every person affected by T1D by accelerating progress on the most promising opportunities for curing, better treating, and preventing T1D.

Although you can never outgrow T1D, treatment options are improving all the time, and people with T1D can lead full and active lives. JDRF is driving research to improve the technology people with diabetes use to monitor blood sugar levels and deliver proper doses of insulin. As new tools and technologies are developed to treat T1D, people with T1D achieve tighter glucose control and life expectancy significantly improves. In the meantime, one of the best things you can do is listen and learn from the experiences of others while also responding to your loved one’s individual needs or tending to your own. Avoid blaming yourself or your child when things don’t go smoothly. The reality is T1D is a difficult disease to manage, but we have come a long way and the technology is getting better all the time. Take advantage of the people, products, and other resources available to you.
Daily Life and Management


What is the optimal blood sugar range?

You should check with your doctor to determine the range of blood sugar levels best for the individual with type 1. In general, optimal blood sugar goals are: Before Meals: 70-110 mg/dL At Bedtime: 100-140 mg/dL

If your before-meals blood sugar is consistently lower than 70 mg/dl or higher than 140 mg/dl, or your bedtime blood sugar is consistently lower than 100 mg/dl or higher than 160 mg/dl, you probably need a change in your treatment plan and should consult your doctor. Blood sugar goals may be modified for children and others who are at greater risk for hypoglycemia.


What foods should a person with type 1 diabetes eat/avoid?

People with type 1 diabetes (T1D) should discuss their individual dietary needs with their doctor. Individualized meal planning is an integral part of every diabetes care plan. The key to every plan is balancing diet, exercise, and insulin intake to achieve blood sugar levels as close to normal as possible. It’s important that anyone new to T1D develop strategies for eating out and controlling portions, and that they understand how to read and comprehend food labels. JDRF Kids Online has additional information on healthy eating for kids with T1D and their parents. You also might want to join Type One Nation, JDRF’s online community for people touched by T1D. The site features a Diet and Nutrition group and a Recipe Swap group.

For more information on nutrition and diabetes, the National Diabetes Information Clearinghouse provides information on eating and diabetes.


Are there in-person support groups or others I can talk to about everyday issues?

Yes. JDRF has many compassionate, understanding, and dedicated volunteers who have been through many of the things you are experiencing and are more than happy to help you. Our Online Diabetes Support Team is made up of such volunteers. In addition, your local JDRF chapter can tell you about support groups in your local community that meet on a regular basis. Additionally, you or your child also might want to join Type One Nation, JDRF’s online community for people touched by type 1 diabetes (T1D). Type One Nation features blogs, discussion boards, forums, and other interactive resources on various topics related to living with T1D.


What do I need to know about type 1 diabetes in school?

School presents a host of challenging issues for children with type 1 diabetes (T1D), and it’s important to know how to work with the school to ensure the best care for your child. JDRF’s School Advisory Toolkit is a comprehensive resource for parents, teachers, nurses, and everyone who provides care for a child with T1D in school. It was written and compiled by JDRF volunteers with a direct T1D connection, and reflects their personal experiences. JDRF’s Back-to-School Webcast also discusses information on setting up 504 Plans and other topics found in JDRF’s School Advisory Toolkit. Additional information, articles, and links about caring for a child with diabetes in school can be found on our Type 1 Diabetes in Schoolpage.


How do I know whether I or my loved one is getting the best medical care available? Is there a list of recommended doctors and health care experts I can check?

Ultimately only you can determine whether or not you or your loved one is seeing the right doctor, but we will attempt to provide general guidelines to help you make that determination. On your next visit to your doctor, you may want to ask some or all of the following questions, in order to determine his or her level of expertise with type 1 diabetes (T1D) management. If you don’t feel comfortable with your doctor and have difficulty engaging in dialogue with him or her, it is probably best for you to seek alternate care.

Questions for your doctor:
How many patients with type 1 diabetes do you care for in your practice?
Are you familiar with the Diabetes Control and Complications Trial?
Do you work with a type 1 diabetes nurse educator?
Do you work with a dietitian knowledgeable about type 1 diabetes?
Do you work with an eye doctor knowledgeable about diagnosing and treating eye problems related to type 1 diabetes?
Do you have any experience with insulin pumps or continuous glucose monitors?
Is someone available 24 hours a day to help me manage problems with my type1 diabetes? How do I contact that person?

You can also ask other people with T1D or parents of children with T1D in your area who they recommend. In addition, theAmerican Association of Clinical Endocrinologists (AACE) website is an excellent resource for T1D care information, and allows you to search for an endocrinologist in your area.


Where can I get a medical ID for my child?

A number of companies make medical alert bracelets specifically marketed toward children with type 1 diabetes. The Children with Diabetes web site has a comprehensive listing of medical ID products.


Does JDRF offer resources for adults with type 1 diabetes?

JDRF appreciates the need for resources and support among members of the adult type 1 diabetes (T1D) community. JDRF is active in research that benefits people with T1D at all ages and all stages of the disease, with special programs geared to both children and adults.

The JDRF website features a special page in the “Life with T1D” section with materials and articles for adults. In this section of the website, you can download the Adult Type 1 Toolkit, a comprehensive free guidebook that contains important information and insight for adults, including a toolkit specific to newly diagnosed adults with T1D.

Another great resource for adults with T1D is JDRF’s online community for people touched byT1D, Type One Nation. Type One Nation features blogs, discussion boards, forums, and other interactive resources on various topics related to living with T1D.

JDRF also has support groups and other activities geared to adults living with T1D. More information about participating in your area is available from your local JDRF chapter. You can find contact information for your chapter on the locations pageof the JDRF website. I need financial assistance for type 1 diabetes supplies and/or healthcare. There are pharmaceutical assistance programs offered directly by some drug companies for people with type 1 diabetes who have little or no insurance to help offset the cost of supplies or prescription medications. The Partnership for Prescription Assistance (888-477-2669) offers a point of access to hundreds of assistance programs that have joined together to provide savings to the uninsured. The Together Rx Access Card (800-444-4106) offers 25 to 40 percent off brand-name prescription medications at pharmacies nationwide. Needy Meds is a non-profit organization that provides information about patient assistance programs to help people who cannot afford medicine or healthcare costs. It provides a database of clinics that offer healthcare at no cost, for a small fee, or on a sliding scale. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has a publication called “Financial Help for Diabetes Care.”


Where can I find health insurance for myself or my child with type 1 diabetes?

The federal government’s new site, Healthcare.gov, has information about health insurance options as well as an easy-to-use guide to help you find out which private insurance plans, public programs and community services are available to you. Also, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) has a publication entitled “Financial Help for Diabetes Care.”

For your child, every state in the nation has a health insurance program for infants, children, and teens who are not otherwise insured. To find out about programs in your state, search Insure Kids Now!, offered by the U.S. Department of Health & Human Services (or call 877-KIDS-NOW). Another option to investigate is your state Children’s Health Insurance Program (CHIP).


I have type 1 diabetes and need help finding life insurance.

People with type 1 diabetes (T1D) may encounter difficulties obtaining life insurance. It may be necessary to do some individual research to find a company that will provide you with a policy. While JDRF does not keep lists of companies that offer life insurance to people with T1D, we can offer some direction to help you start your research into finding a policy.

An online search engine is a good place to begin your research. If you do a web search using terms such as “diabetic life insurance,” you should find companies that will provide coverage. JDRF cannot vouch for any of the companies that you may find in this manner, however, so we strongly recommend you investigate them thoroughly.
The American Diabetes Association has helpful tips about obtaining life insurance for people with T1D.
You can get in touch with your state’s insurance regulatory office to see if it has any recommendations.


Where can I find information about camps for kids with type 1 diabetes?

JDRF Kids Online has articles on diabetes camps. In addition, state-by-state listings of summer camps for children with type 1 diabetes (T1D) can be found at the Diabetes Education and Camping Association and Children with Diabetes web sites. You can also search for T1D camps on the American Camp Association’s web site.


Research


Where can I find information about clinical trials?

JDRF’s Clinical Trials Connection provides people affected by type 1 diabetes (T1D) and its complications with up-to-date information on clinical trial participation opportunities.

Clinical Trials Connection is an online service that allows you to “opt-in” to get information about trials, and access to them. It contains information about all currently active T1D trials in the U.S. Based on the criteria you choose, the connection provides you with information about selected trials and how to contact the researchers conducting them. You can also choose to receive regular updates so that you’ll know when new trials that meet your criteria become available. If you find a trial that interests you, you can discuss it with your doctor and also contact the trial’s primary investigator with any questions or concerns.


What’s the latest research information? Is there a cure in sight?

This is the question JDRF is best equipped to answer, as the leading global organization focused on type 1 diabetes (T1D) research. Driven by passionate, grassroots volunteers connected to children, adolescents, and adults with this disease, JDRF is the largest charitable supporter of T1D research. The goal of JDRF research is to improve the lives of every person affected by T1D by accelerating progress on the most promising opportunities for curing, better treating, and preventing T1D. JDRF collaborates with a wide spectrum of partners who share this goal.

Since its founding in 1970, JDRF has awarded more than $1.6 billion to diabetes research. Past JDRF efforts have helped to significantly advance the care of people with this disease, and have expanded the critical scientific understanding of T1D. JDRF will not rest until T1D is fully conquered.

JDRF’s research goals are realized by the projects being supported in three basic areas:

Cure: Restoring a person’s insulin-producing capability and halting or reversing the body’s misguided immune attack on the pancreas.

Treat: Developing new devices and therapies that optimize blood sugar control and treat or prevent the complications of T1D.

Prevent: Preventing T1D from occurring or stopping the disease process before it damages the pancreas.

Additionally, JDRF produces regular research updates to help keep you informed on the latest progress in T1D research. To stay informed on the latest news, please subscribe to our free online publication Countdown; review the Research pages on JDRF.org; visit our newsroom and check out JDRF’s News Blog. All of these resources are updated with new stories frequently. How can I help find a cure? The best ways are by making a donation or volunteering with JDRF. The goal of JDRF research is to improve the lives of every person affected by type 1 diabetes (T1D) by accelerating progress on the most promising opportunities for curing, better treating, and preventing T1D, so you know that the money you donate or help raise will be used appropriately. More than 80 percent of JDRF’s expenditures go directly to research and research-related education. JDRF has many wonderful opportunities for volunteers. Events such as Walks, Galas, Rides, and various other fundraisers are great ways to meet other families dealing with T1D and forge bonds that will last a lifetime. In addition to fundraising, JDRF volunteers also invest time in our grassroots advocacy initiatives, such as Children’s Congress and thePromise to Remember Me Campaign. While JDRF is the world’s leading charitable funder of T1D research, we also advocatefor federal support of T1D research, in order to ensure that sufficient funds will be available to support the critical human clinical trials needed to ultimately cure T1D.